 Good morning or good afternoon everyone depending on where you're located across Canada and there are a number of people across Canada joined us today so I want to welcome all of you. My name is Jennifer Campbell and I'm a project lead here at the Canadian Institutes of Health Research and I'm really pleased to be moderating this session today so I do want to welcome you and just a reminder that for this session the only people who can speak will be the moderators and so we will rely on the chat function for your questions and comments throughout the session. If you have questions and comments please do use the chat box at the bottom left of the blackboard window and when you hit return or enter they will appear for all in all the participants to see. We will hold all the questions and have a question and answer session at the end and I give you but please do feel free to post any comments questions throughout the session as we continue. There we go I want to introduce to you today's presenters. First we have Dr. Nancy Edwards she is a distinguished professor at the University of Ottawa and a full professor in the School of Nursing. She was appointed as the scientific director with the Institute of Population and Public Health with CIHR in July 2008. Dr. Edwards obtained her undergraduate nursing degree from University of Windsor and completed graduate studies in epidemiology at McMaster and McGill universities. She is a fellow of the Canadian Academy of Health Sciences and has been awarded two honorary doctorate degrees. Dr. Edwards clinical and research interests are in the field of public and population health and she has conducted health services, policy and clinical research both nationally and internationally. Her research has informed the design and evaluation of complex multi-level and multi-strategy community health programs. Her work in global health has spanned four continents where she's led both developments oriented and research focused topics. And also as one of the main presenters today Dr. Christina Wolfson, one of the co-PIs of the CLSA. Dr. Wolfson is a professor in the Department of Medicine and in the Department of Epidemiology and Biostatistics and Occupational Health at McGill University where she is also an associate member in the Department of Neurology and Neurosurgery and the Department of Mathematics and Statistics. She is the program director for the NMS national education and training program. She's a fellow of the American College of Epidemiology and her program of research lies in population based research in neurodegenerative disorders including multiple sclerosis. Sorry, multiple sclerosis, Parkinson's disease and epilepsy. So as I said she is one of the three co-principal investigators of the Canadian Longitudinal Study on Aging. And so I want to welcome both of our speakers today. And today we're going to hear about the data access portal and of the Canadian Longitudinal Study on Aging. And with that I want to turn things over to Dr. Nancy Edwards to bring the readings from CIHR. I'll start with an Australian expression today because that covers afternoon and morning and our time zone in Canada. I'm so grateful to be here and to be co-presenting with Tina. Tina taught me statistics at McGill many years ago and I can tell you she's a fantastic teacher as well as being a superb scientist. So I'm really looking forward to her talk. So everybody just on behalf of CIHR and the Canadian Longitudinal Study on Aging, I want to welcome you to this webinar which is going to feature the data preview portal for the CLS-8. And I'm here on behalf of CIHR. I'm one of two scientific champions from among the 13 CIHR institutes. Dr. Yusonet who I think many of you know is the other scientific director champion of the Institute of Aging. He wasn't able to join us today but he sends his best regards and his warmest congratulations to the CLS-18 for meeting what is really a historic milestone, the release of the CLS-8 data for use by the research community across this country. CIHR has supported the development of the CLS-8 for over a decade now hard to believe and indeed the work of the CLS-8 and the data generated is not only of interest to researchers in their realm of aging and science and also population and public health but also is certainly of interest to I think all areas of CIHR's 13 institutes and we have many discussions about the CLS-8 at slides council so all institute directors really have some significant engagement in this. This slide just reminds us that it's no secret that the population is aging. I see it when I look in the mirror every morning and you can see here the projections showing that the percentage of seniors aged 75 and higher is rising significantly and we have many decision makers who are concerned about this and I hear this talked about in many of the venues where I spend some of my time. This just shows the grand opening of the CLS-8 in September 2012 at McMaster University. This involves an investment from CIHR of over $65 million and that has helped to create the CLS-8 and support its implementation. It's a very important platform for research in this country. It was one of the first major actions led by the CIHR's Institute of Aging as I mentioned strongly supported by all other CIHR institutes and its deployment now has been three scientific directors of the Institute of Aging as Dr. Asia Hebea, Dr. Ed and Marcine Matthews and now Dr. Eve Shulanat and all of them worked very closely with the CLS-8 investigators and the research community to help provide the support that's needed to get this off the ground. CIHR continues to support the ongoing development of what really is a unique longitudinal platform and it's among the most comprehensive of its kinds in the world. I think, finally, the long-term vision and investment that began nearly a decade ago has started to pay off and it's very exciting times. As you'll hear from Dr. Wilson in just a few minutes, the CLS-8's goal of reaching 50,000 participants is very close to being met as a member of Canadians who have completed telephone or home in-home interviews and data collection sites has now surpassed 46,000. This is a highly anticipated milestone. The CLS-8 is a unique longitudinal platform for the Canadian and the international research community. It focuses on the determinants of active aging as well as the trajectory leading to health changes in overage. It's a platform for science. That's how we refer to it at Science Council. It's therefore a resource for Canadian and international researchers to draw on. Now, I'll highlight just a couple of strategic initiatives of CIHR that I think illustrate the potential for application of CLS-8 data across a number of initiatives within the organization. So the work in health signature initiatives, one of our most recently launched initiatives, that involves extensive work and retirement modules in the CLS-8 that you'll hear more about today. The environments in health signature initiatives is another example where we have a platform component which will help to enable linkage of CLS-8 data on the health of participants to other kinds of data, such as air pollution data from Health Canada, or potential linkages to data on things like land use patterns, lockability, urban design, and transportation systems. A third initiative is the Canadian Consortium on neurodegeneration in aging. And here we see efforts to harmonize data across studies and a very important focus on cognitive impairment in aging. And of course, CIHR's open program competition, particularly the project team, but also the foundation team, provide opportunities to use the CLS-8 data and applications in that realm would be eligible, and very welcome. I'd like to finish off my part here by just congratulating Drs. Parminder Reina at McMaster University, who I've known for a long time, Christina Wilson at McGill, and Susan Kirkland at Dalhousie University, as well as the entire CLS-8 team of over 160 co-investigators and collaborators. Their work has been monumental. We should celebrate the science of exclusion and the generosity of all those who make the CLS-8 possible, including the 46,000 climbing Canadians, the CLS-8 participants, who are absolutely fundamental to advance this science that lie ahead. So with that, I'll turn it over to Christina. So thank you very much for inviting me to give this webinar. I'm hoping that my microphone is working correctly. So what I wanted to do today, first of all, I have to say that I have far more slides than I would ever recommend my students use in a presentation. So I might be a little bit selective towards the end so that we get a chance to get your questions and hopefully your input. I know I'm going to leave something out. This is a very, very large undertaking for one person to speak about, and certainly I am presenting this on behalf of, first and foremost, my two co-principal investigators, Parminder and Susan. We've been together since the onset of this idea, which was actually in 2001, so it's actually quite a bit more than a decade. I will talk primarily about the CLSA as a platform. I kind of live in two worlds in relation to the CLSA. For me, it's a research study, a research project, the largest I've ever been involved in, but nevertheless a research project. But it is also a national research platform and that's really what I'm going to concentrate on today. What I will talk about is I'll give a little bit of background. I am going to talk about the methods. I think anyone interested in using data should know a little bit more about the methods. I'll talk about the content, how it was developed, and some information on the content itself. I'm going to give a little bit of an update on the status of the study and I can actually increase Nancy's numbers as of today. I will give what I call, in quotes, some results. Basically, I'm going to give you a little bit of a teaser about some of the information that is available in the CLSA from summary statistics. Then I'm going to talk about access and I will refer to our data preview portal. If I have time, and I'm going to monitor this very closely because the very important thing is to get your questions, I will talk about the follow-up, some changes that are planned, modifications, and additions to the follow-up. Then I think Nancy's coming on for a couple more slides at the end. If that's okay, as used to be said when I was little, if everyone's sitting comfortably, I'll begin. I think you know this already. Anyone who's visited the website or seen anything in the news recently, 50,000. The goal, the target is 50,000 participants from across the country. A little bit more, a little bit different from other studies of aging. We're recruiting people between the ages of 45 and 85 at baseline to try and capture not only the older individuals but also the baby boomers. It's a 20-year study, I like to say at least 20 years, with major data collection waves every three years. As already been noted, there are more than 160 researchers and 26 institutions who have been involved in the planning and the development and the implementation of the study. It goes without saying that it covers many different domains of research. We have a vision, and our vision is the platform, the study as well as the platform, even beyond the CLSA itself, because as part of our activities as a team, we've also built an infrastructure for research and aging across Canada that potentially can be used by others. Just putting in, I can't resist, putting in some timelines, a request for applications was sent out in 2001 in November, I remember distinctly, with a deadline for submission of January 2002, so three months to put together an application to develop the protocol. Along the way, we've been funded by CIHR to develop the protocol to conduct feasibility studies, to do validation studies and pilot studies at each point, so little IR means we had international review. In 2011, we separately went ahead and before 2011, but we applied for and were successful in obtaining the Canada Foundation for Innovation Award that allowed us to build the infrastructure upon which the CLSA sits. We then began recruitment for the baseline for the cohort itself and baseline data collection, and we anticipate in the summer of 2015, so I keep saying that, but it's really just a few months, we'll begin the first follow-up of all 50,000 of our participants. We have a very large research team, I said 160 investigators, I just wanted to highlight the individuals who are involved more closely with the development and certainly in the implementation across Canada. Already mentioned by Nancy, the major platform funding, and I put dash one because there is a dash two, which is really good news, $23.5 million from CIHR for the first five years, representing 86% of the required budget with the research team coming up with the remaining Canada Foundation for Innovation and Infrastructure grants, up $26.5 million. This is one of the things I refer to as infrastructure. We have a national coordinating center at McMaster University, directed by Parminderina. We have also built a biorepository and bioanalysis center for the CLSA, which is also located at McMaster. We have a genetics and epigenetic center located at the University of British Columbia, and the statistical analysis center, which is located at McGill, and I'm actually sitting there right now. The additional infrastructure are in-person data collection sites, and we have 11 of these sites, which have been built to very strict protocol and standards, and to allow us to implement the study in the same way across all of the sites, so although they might look a little bit different, we have exactly the same equipment and layout in each of these sites, and this is funded by the CFR. We have a computer-assisted telephone interview sites at the University of Manitoba, Dalhousie University of Sherbrooke, and Simon Fraser. We previously had one, also at the University of Victoria. Again, the infrastructure funding for that came from the CFR. So, jumping right into the meet here, the method. This slide, which is a little bit busy, but hopefully gives you an idea of the design overview. Target 50,000 men and women between the ages of 45 and 85 at baseline. I'm trying to figure out where I can get some things here. I think I can use this. Can you see the pointer if I use the pointer? Just trying to figure out how to use the pointer. Is that a pointer? Someone say yes, if they can see the pointer. Yes? Don't see it. Okay. Okay. Oh, oh well. I can just do direction. So, look on the left side of this slide. So, on the left side of the slide, you'll see a box that says N equals 20,000. Those individuals are what we call the tracking cohort. They have been randomly selected within all 10 provinces, and they are interviewed over the telephone by using a questionnaire using computer-assisted telephone interviews. So, staying on the left side and moving down, those individuals undergo a full follow-up every three years and we do a maintaining contact telephone interview in between the waves, and at the end of the day, we will also be doing data linkage. So, on the left-hand side, we have what we call the tracking cohort telephone interviews, about 60-minute interview that have already been done. On the right-hand side, we have what we call a comprehensive cohort, 30,000 individuals who are randomly selected located within 25 to 50 kilometers of our 11 data collection sites. These folks undergo an in-home questionnaire, which is essentially the same as the telephone interview done by the other 20,000. So, when we're done, we'll have 50,000 with the same information by questionnaire. Those individuals then come in to the data collection site and they undergo some physical assessments, clinical assessments. If they agree, they provide a blood sample and a urine sample in one of our 11 data collection sites. They also follow the same strategy for follow-up, full follow-up every three years with maintaining contact in between and at the end of the day, data linkage. We opted for this kind of a design because for 50,000 people, it was just prohibitively expensive to be able to have all 50,000 people come in to data collection sites. And we also knew that we would not be able to have a random sample across all of Canada in that way because people had to be able to come to the site. And in fact, we can get some really nice provincial-level estimates with our tracking cohort. So, that's generally the overview. And you'll find all this material on our website for those of you who want to do some homework afterwards. So, the study is national in scope. And what we've done with this figure, this map of Canada, is the blue dots represent generally the fact that we are able to conduct our telephone interviews for our tracking cohort across the country. The red dots are the locations of the data collection sites, where the staff are sent out to do the home interviews and the participants come in. So, you'll see our data collection sites, we do not have data collection sites in every province, but we're doing a pretty good job. But we do have the telephone interview cohort in every province. So, just talking about recruitment, we started out this process partnering with Statistics Canada. We worked closely with them designing the CCHS 4.2 Healthy Aging Study, and we actually used participants in that study as a partial sampling frame for the CLSA. These are individuals who had agreed to share their contact information. This didn't yield enough participants. So, we ended up partnering also with Provincial Ministries of Health as a second sampling frame using health registration databases. And finally, our third sampling frame was random digit dialing. Sampling weights, when we release the data, as we release the data, sampling weights have been computed at this point for all of the individuals in the tracking cohort. So, those are available with the data. We do have some exclusion criteria, and the exclusion criteria really are based on the CCHS exclusion criteria as we started with that as our sampling frame, and we needed to be consistent. So, it excludes the residents of the three territories. It excludes individuals living in an institution, living on First Nations Reserves. It excludes full-time current members of the armed forces. People will hold temporary visas, those with cognitive impairment, and those unable to communicate in French or in English. So, we have built those into the recruitment strategies to keep it in line with our original sampling frame. Talk about content development. This study is a scientific study. It is not just a collection of data without thought. There was a lot of thought that went into developing the content. So, this has been done by the scientific management team and content working groups who have been essential in providing and justifying and validating and updating the content that we should be including in a long-term study of aging. One of the things that we have been doing all along also is to compare what we're including or what we were going to include in the beginning with what's being done in other large-scale studies. So, we've looked at what's included in the health and retirement study, the CPTP, the Partnership for Tomorrow project. We've also looked at ELSA, the cohort constant in France. So, we've done a lot of work, particularly with the Maelstrom Research Group in Montreal led by Isabel Fortier, to look at the potential for harmonization across different cohorts. We didn't go the route that we would have exactly what other people were using because there are some differences in what we needed to include relative to other studies, but we are cognizant of the potential for harmonization along the way. So, in the tracking, the telephone interview, these are the modules and the questionnaires are all available on the website. So, please take a look at those when you have a little bit more time. So, clearly, social demographics, we actually added a veteran identifier question to determine if there were veterans, Canadian veterans in the study. We have lifestyle questions, of course, health questions. We also support telephone administered functional status. We do cognitive, some cognitive testing and everything is audio taped and then scored afterwards. So, we do the RAID, the mental alternation test and animal naming, depression, satisfaction with life, social network, caregiving and receiving injuries, labor force, income. So, all of that information is in, I see the question already. I'll get to you later about the cognitive impairment. So, all of that information is in the tracking module. I will talk a little bit about the comprehensive. That is the 30,000 who come in. Although those data are not yet available, we are still doing at the last stages of finalizing collection at the last of the 30,000. But I do think I need to talk about it for completeness. The comprehensive have basically the same computer assisted telephone interview content. They don't have the social support module which has been moved to the data collection site. So, they get that later. But they have additional questions on, there's a short diet questionnaire. They're questions on sleep. And we also ask them to bring, to show their medication to the interviewer. So, we have a module on medications where they're asked for their medications and the din numbers. In addition, at the data collection site, we complete a contraindications questionnaire. So, A, we know what tests we can do on people and B, if there's some information in that that helps us to interpret the results of the assessments that are done. We do a deceased symptoms questionnaire which has a lot more information about disease, obviously, disease symptoms. So, for instance, we ask the WHO Rose questionnaire and we do a screening questionnaire for Parkinson's disease, etc. And as I noted, we do social support, social participation, physical assessments and blood and urine. Okay, I think I must have missed the fact that we do additional cognitive tests also at the data collection site. I know it would forget something. I just wanted to give you a little bit of a flow at the data collection site. So, the arrows hopefully will allow you to follow through if you can't see my little arrow that I'm using. So, people start at reception, they're registered, they do the contraindications questionnaire, they move to another measurement room where you see the information that's collected on them there, the physical measures that are done. They then go into measurement room two where there's a DEXA and then they move into measurement room three where we do visual testing, visual assessments, grip strength and we start with some additional neuropsychological testing. They then go into the hallway which we also use for data collection where they do some performance testing. They then go into another room and have hearing, the deceased symptoms questionnaire and the second part of the neuropsych testing. They then provide the urine sample and there's the blood draw and then they check out. We give them a few of the results right from what we've just done on them. We give them a little snack and we give them $30 reimbursement for any kind of travel that cost they may have had. And they're there for about two and a half to three hours at the data collection site. So, I mentioned we also have the maintaining contact which is about a 30 minutes interview which is currently ongoing where we've added some additional components that we weren't able to fit into the baseline way. So, I just wanted to make a couple of comments here is that CLSA is a paperless study. Everything is electronic. We have, of course, we have paper in case we have no internet access but basically everything is paperless at this point. All the information is stored and then exported onto secure servers. So, you see we begin by pre-recruitment, participants consent to participate. They then provide their questionnaire data. The questionnaire data are stored at the statistical analysis center where all validation and data cleaning takes place and where the data are prepared for dissemination for researchers. The data collection site visit all of the alphanumeric data and also the images are also sent to the statistical analysis center and to the national coordinating center. The biological specimens are sent to our biorepository and bioanalysis centers. So, this is all electronic. So, let me give you, I know I'm whizzing through this but I just wanted to get to access. So, let me tell you about status so you know where we are. So, for the telephone interviews which I've called the tracking cohort, we finished our recruitment and baseline assessment of our target of 20,000. We actually ended up with 21,241 because at some point in time we realized we were not capturing below SES groups. So, we did a little bit of additional sampling and kept to those, kept the full sample. So, we now have 21,241. So, these data are available for release to researchers and in fact have already been released to two sets of research teams. The maintaining contact interviews that were started in 2013, about 13,000 of those have been completed with about 4% loss and that includes deaths as well as withdrawal. So, it's looking pretty good. And we will begin the first follow-up this summer. Now, I do want to note that as of today that cognition data and some of the open text have not yet been released in the first release but should be available in the second release very soon. So, for the comprehensive cohort, still completing data collection for some of those 30,000. So, right now and I think these numbers are higher than Nancy would have said. So, we've completed 29,243 in-home interviews from our target of 30,000, which is pretty good. Of that, because there is a delay, one two-week delay in coming to the DCS, we've done 26,656 DCS visits. These data, because of course they're not yet complete and have not yet been fully cleaned, although cleaning is ongoing, will only be released sometime next year, hopefully spring. And we've started maintaining contact with those folks as well. And again, we have about 4% loss and we will begin the first follow-up in the summer of 2015. So, we're very, very close to our target. So, here are my results and I'm only going to talk about the tracking data because these are the only data that are available for release at this time. And I want to acknowledge that I've pulled some of these slides directly from presentations that were given previously at the Canadian Association of Gerontology, because I don't actually have access to the data to be able to do multiple analyses for this presentation. So, I've pulled on other results. So, just to give you an idea, we have the raw counts and the raw percentages and also applying the sampling weights. I can just give you the age distribution. It's not surprising that we can see there's a slight difference between the raw percentages and the weighted percentages because we are talking about a sample. So, these people are ultimately selected in some way that they wish to volunteer for such a study. Male-female, we have about 25% French speaking who are included in this. And I'm just trying to get rid of, oh yeah, but 84% are reported that they're born in Canada. So, just looking at province, this and again, you can see here, so I think we've done pretty well in terms of the tracking telephone interviews. We have a reasonable distribution pretty much follow the provincial size, I think, in terms of the size of the sample and the tracking. So, I'll just give you a second to look at that. Obviously, Quebec and Ontario have the largest sample. Just pulling some features out about the chronic conditions, just looking at arthritis, COPD, hypertension, dementia. There was a question here about cognitive impairment. I mean, we used a similar strategy to Statistics Canada. It was the interviewers actually were the ones who determined whether they felt the person was able to participate. So, there were people who came into the study and said, yes, that they had received the diagnosis of dementia or Alzheimer's disease. From the telephone interview perspective, right now, until we get any kind of healthcare utilization data, we can't verify that. But those are the data we have at this point. So, we have Parkinson's disease or Parkinson's and cancer and osteoporosis and the weighted values you'll see there too. So, just looking at marital status, again, this is really just to give you some basic snapshot teaser information. There's a lot of data here, a large number of different kinds of groups, sort of the educational groups. And as you see, we felt we were a little low on our lesson secondary. So, we did some additional sampling in postal code regions where we knew that there would be lower SES. And so, that has helped to improve our data. Annual income. So, looking at some things like self-rated health, again, raw percentages and weighted percentages. Excellent. Not surprising. A lot of people consider themselves to be an excellent for a very good health. Self-reportive weight and self-report for this group. It's not measured at this point. Satisfaction with life. You can't see that. I see that the logo is on top of that. But the numbers are very similar. 9.8 percent dissatisfied in the raw and also in the weighted 4 and 4.5, 86 and 85. I pulled out another set of slides because we have individuals, of course, who are very interested in looking at the retirement information that we have available in the CLSA. We had a lot, quite an extensive module on retirement. These are already weighted and they come from the tracking cohorts. And so, if you can look here, the percentage of people who are completely retired, partially retired, not retired, the percentage of people who are retired and returned to work, which is of course a very interesting phenomenon. And looking just for my own curiosity, looking at the people 65 to 85, we've got 26.5 percent of the males say they're retired and they return to work of those who have retired. Very interesting. So, a quarter of those people. So, looking at those who are not retired, looking to see the percentage you are currently working and then also the percentage of people who have more than one job. What I'm trying to do here is to just give you a taste that we've got information on lots and lots of different variables for obviously for the research community to pull out and propose to do their own studies with. I do want to draw attention to the work and retirement modules because some people think that the CLSA is a study just of diseases. It's not just the study of diseases. We have a lot of information on some of the other, many of the other aspects of living as you age. So, for instance, we've got age at retirement, spouses retirement status, reasons for retirement, preparation for retirement, return to work after retirement, reasons for return, full-time, part-time type of work, etc. We also have included a retirement planning module because we have a large number of people who are not at the usual retirement ages. So, we ask them when they plan to retire, how they're preparing for that, their adequacy of their income, and reasons for planned retirement. It's going to be very interesting over time to go back to the same people and see how their plans played out three years, six years, nine years from now. General health and function, again, just to give you a little bit of a taste, here's a graph of the self-rated health just so you can see. I don't think that this is unusual for large-scale studies. People generally self-rate their health as quite good, even when they have a number of chronic conditions. Looking at functional measures, 10% are reported that they had difficulty walking alone up and downstairs. 37%, interestingly enough, more than 37% talked about finding it difficult to follow conversations if there's background noise. So, we have information, self-report information on hearing and on vision. So, hearing, is your hearing using a hearing aid if you use one? Excellent. All the way to poor. So, you know, I don't do research in hearing. I'm sure that this is something that others would be looking at, just in terms of social isolation as well. One of the particular things that interests me, I'm interested in veterans' health. We included up a baseline set of veterans' identifier questions with funding from Veterans of First Canada. And as it turns out, just in the 20,000 participants we have in the tracking cohort, there's 1,763 people self-reported themselves with veterans, which is 8% of our sample. If this 8% continues through into the comprehensive, we will have one of the largest veterans' cohorts in Canada following forward in terms of health, physical and mental health. So, that's an interesting concept that we're going to study that really is not targeted to this. If you can add something and generate a whole sub-area of research that one didn't anticipate. So, now I'm going to talk about access. I'm cognizant of the time here. So, I'm only going to talk about access to the alphanumeric data from the tracking cohort members, 21,241, who completed 60-minute computer assisted telephone interviews. So, one of the main principles behind the CLSA is that the data and in time, the biospecimens will be available to the research community. That's a fundamental tenet of what we're doing. In doing that, though, we have to ensure that the privacy and the consent of participants have to be protected and respected. So, this is why we have an access process that we ask all applicants, including researchers who are a part of the CLSA team to adhere to. In being awarded, if you like, or approved access to these data, we also have to ensure that the confidentiality and the security of the data and biospecimens have to be safeguarded. So, we do ask approved applicants to engage in a CLSA access agreement where all of these requirements for confidentiality and security are stipulated. Clearly, this is a unique resource, and so we do want to ensure that it's used optimally. So, we do, as I said, so we do have a process in place in order to try and ensure that we do the right thing with these data, things that the participants are expecting us to do with them, and in line with the consent that they've given. I've tried to streamline what the process is, breaking it down into steps. All of this information, of course, is on our CLSA website. So, the first step, of course, is one would have to submit the application. The form is available on the data preview portal, and at the bottom I put in green the email address that I ask people to submit the request to. First, we do an administrative review. We need to make sure that all the eyes are dotted and the T's are crossed before we submit the application to the data and sample access committee for review. They conduct their review, then make a recommendation to the scientific management team whether or not they propose that the application be approved or not be approved, or be conditionally approved, depending on various components that need to be completed, and then the applicant is notified. Based on our experience so far, I think I can quite comfortably say that the first four steps take three to four weeks. The next step is that the CLSA access agreement needs to be prepared and signed, and this access agreement is between the McMaster University and the host institution of the individual who has approved access, who has been approved the application. This is a timeframe that we really have very little control over, and depending on the speed that this is being done, it could take two, three weeks, could take four weeks, could take five weeks, could take six weeks. We haven't done enough of them to get a really good distribution to see what the mean is, but that is an unpredictable component of the timing. Once all of that is done, once the access agreement has been prepared, everybody agrees to it and everything is signed, then the raw data are provided to the approved investigators, and we have enough experience now to know that we can do this in five working days. So once the access agreement is done, it takes us five working days to place the data set on the cloud, on the cloud, and to email the applicants, the approved applicants, give them a certain number of downloads and the password, and they download and they're good to go. So in essence, it's not a very long process. We have one piece of the process, though, that is a little bit unpredictable. I would ask to talk about costing. So for costing, the overall plan has always been to provide the data and the biospecimens, although that's for a little bit later, on a cost recovery basis. This is not a profit-making organization, it's cost recovery. The figure that we've come up with at this point, and this relates to the amount of time and the amount of energy and resources it takes to prepare a data set, an alphanumeric data set, is we have set the cost at $3,000, and we have also implemented and already sent out the data in this way, that there was no cost for the data for graduate students. So if a graduate student is making an application and the data are for their thesis, there is no cost. But for investigators at this point, there is a cost. We are rediscussing this. We have heard from researchers some who say, well, that's quite reasonable. It's quite a reasonable cost given the fact that you don't have to collect the data yourself. You're getting this data, essentially, from another source. Other people are saying that $3,000 is a barrier to the use of the data. So we are really rediscussing that we're early stages of data release. So we have to rediscuss this. We have a data and sample access committee. And for 2015, we've already had one meeting, and we're planning four more meetings this year. We can't take, at least from a practical perspective, we can't take applications on an ad hoc basis because we have to ramp up everything each time we get the application. So it's much more practical for us to set specific dates for the meeting. So what we've done is we set application deadlines, and then the meeting takes place usually within two weeks of the application deadline. So these are the application deadlines that I've listed here for 2015. I just wanted to show you, sorry I can't do this in real time, is we have developed a data preview portal and there's the web address. It's quite simple. It doesn't have a lot of bells and whistles. It's got big boxes for you to click on. You can click on the CLSA overview box, and that will take you to the documents that are of interest to you, the questionnaires, the protocol, some of the technical documents about the sampling weights, etc. You can then, you can also click on to the middle box, which is called data sets. And once you do that, you'll see this, and what you'll actually see is that you're able to click on the variables and do a quick search and get some descriptive statistics. So I'm going to take you to the next slide where you see. So here you get the list of variables, and if you want to click on any of those variables, you will get univariate descriptive statistics. So if you want to just click on, I can't do it because I can't do it in real time, if you want to just click on sex, then you're going to get a little table that tells you the percentage of males and females. We've only done this univariately. It's still a little bit of a work in progress, a lot of data, kind of a novel feature that we've introduced for the CLSA. So bear with us if it might take a little bit longer for you to do that. And this is only available for the alphanumeric data for the tracking cohort at this point in time. So I just want to give you an example of some approved applications. Not all of these people have yet completed the process of the access agreements and have the data released to them, but we've got applications from across the country, consumer product related seniors, neurological conditions. Here we are hearing loss and social function, veterans, looking at retirement transitions, expectations and planning. This is a student application and this was actually data that has been released already and has been provided, no charge. Who is at risk of social isolation and loneliness? An application from a student companion animals in the aging population. Again, these data have not yet been released. They're still working on the administrative aspects here, but these will be released free of charge. Factorial invariance of the CES, the depression scale, and development of normative data and comparison standards for cognitive measures. So these are just a selection. We have a few more in the pipeline that we're working on some of the details that so far that these data have been approved. Linkage, I don't want to forget to talk about linkage. Linkage is key. We do active data collection. There is also the possibility of passive data collection and then linkage of these so-called passive data to the information in our cohort. So obviously, administrative provincial health databases and we're working on that. We have strategies to work on that. There's these registries, population level databases, community characteristics, climate and pollution. And I'm really happy and this is really hot off the press. We have largely due to the hard work of Parmingarina, he's been able to create a collaborative agreement with Health Canada to get pollution data on the participants in the CLSA. And in fact, just this past week, we received the information and actually linked the pollution data for the 21,241 individuals in the tracking cohort. So we haven't got any of that information yet on the website, but just to say we've actually done that, which really enhances the information that is available in the CLSA platform. Collaborations Nancy's mentioned a few right now. We're obviously collaborating with the Canadian consortium on neurodegeneration in aging. One of the things that we've done because it is quite complex to create this kind of a collaboration is we created a liaison committee. And I suspect that that would be a strategy that we would use for other large collaborations is to create a liaison committee to ensure that both groups are clear on their expectations and responsibilities. So that's going well. We also have currently submitted an application to CI Charter to develop some brain imaging, which currently is not being done in the CLSA. We've got lots of partners who have worked with us providing funding or providing data or just providing a lot of support to us through P-HAC, we've worked on injuries and the neurological conditions, Health Canada, Veterans Affairs, Statistics Canada has been very helpful in the early days giving us methodological input and some information on the sampling rights, Ontario Ministry of Health and long-term care, the provinces and the university. So there are many more partners than this, but I just thought I would list some of those. I'm going to take a couple of minutes to talk about the follow-up because right now I've just talked about the snapshot, the cross-sectional data. So we're going to start the follow-up. As I said this summer, we're going to be re-contacting every one of our participants, the tracking by telephone and the others are going to be contacted to redo the in-home and the DCS collaboration. So that's high on our agenda for planning. What's interesting, might be interesting for you to know is that for the first follow-up, we're proposing some new content. We're in collaboration, for instance, with the P-HAC, we're going to be adding child maltreatment questions, elder abuse, we're adding an epilepsy screening tool, we're adding additional questioning on hearing, arterial stiffness, we're adding a decedent questionnaire because we will be contacting participants to find out that they will have died since the last time we were speaking to them so we're going to be developing, the President is developing that. We're adding workability, we've added subjective cognitive decline questions, transportation module, pumping up a little bit from what we have before, healthcare use, we just actually discussed that this morning in our regular weekly call and preventive health behaviors. So we're not, this is not a static study where we just repeat the same thing over and over again without taking into account new research questions and things that other researchers have suggested to us should be part of the CLSA. We're also in our follow-up funding has been funded to analyze some of the baseline biomarkers because up until now there was no funding available through the CIHR fund to actually do analysis of the biomarkers or even of the alphanumeric data. I think I'm going to, even though that's incredibly important, I think I'm going to skip that slide just so that I can be sure we have a lot of time for questions as I see them coming in. Again, this is just the list of the funders and the partners. I don't think anybody is going to be reading that in great detail. You can always find that on our website. I do want to talk a little bit about our governance and our advice that we receive. A study of this slide has to have a lot of components to keep it going. We have a scientific management team. We meet weekly. The PIs and our associate scientific director and our executive national manager meet weekly. We also have an international scientific advisory board and as I'm reading this, I realize I've forgotten our advisory council. We have a scientific advisory board and we also have an advisory council. We of course have the data and sample access committee. We have a knowledge translation and communication committee, a training and research committee and we're very fortunate to have an ethical, legal, social issues advisory committee who are part of TIHR where, and we have used these individuals on this committee over the years many times to get advice on various aspects of the study related to the ethical, legal and social issue. For those of you who are saying, well, where and how do I, you know, put in an ask for dollars for the access costs for CLSA. Now, some of you will already have funds that you can use for that purpose and you can be out the door, I guess, right away. But for others, if you are thinking about an application either to the project scheme or the foundation scheme as part of our open operating program or you're submitting something under TIHR priority driven initiative, so that could be the work in health initiative, the environment health signature initiative and so on, then you can put in as a budget line the cost for accessing the data or the samples. These are considered eligible expenses within the research applications. And just a note here in Christina, you might want to add to this, but each unique data access request may involve separate data access fees. So, you want to be aware of that when you are preparing your budget. And I think Christina, you might want to elaborate. I saw a couple of questions coming in that were sort of getting at that, at that very query. Yeah, yeah. I, this is an issue that we have been discussing. It hasn't happened yet, but I can certainly see, I think what we're talking about is the difference between a request for data for a single project versus request for data for a program. So, someone has several interconnected projects. I think it's very difficult to give a single answer to that without having an example in front of us. I mean, what, of course, we don't want and we don't expect researchers to do this, but we don't want people to say, look, let's all get together and put in a request that we want all the data and we'll only have to pay once. I think that we're going to try and be very judicious about how we apply these fees. The point is not to make money on this. The point is just to enable us to have to keep the resources flowing here, for instance, at the statistical analysis center so that we can get the data out in a more timely fashion by having the right number of staff. So, I think I'm going to, for the moment, I'm going to dodge an answer to that question. I think we're going to have to think about it a little bit more carefully. So, preparing an application that has that question would contact the CLSA team. Yeah, I think that's, I think that's very wise. I think I, you know, either me directly or our access email address and give us the heads up that something like that is coming and we can give you advice on how we feel about it, because I think that there are so many permutations and combinations of what the family is. You know, you're getting some repeating questions and so on. These are things that might also appear on your website as a frequently asked question where you have a chance as a team and as a precedent how you're going to address it. So, I think both the questions we're getting today about other questions that you will get will really help with that. Trying to sort out some of these, that issues and various permutations, as you say. Well, that's exactly it. So, that's why, you know, doing something like this and in every presentation we give, it's very valuable because we get questions. I've been so close to this for 14 years. So, we get questions that maybe we haven't thought about and we have to come up with a way to address them. So, that's incredibly helpful for us to do what's best for the research community and what also works for the CLA. And I think that there's some people still having some trouble with the volume. So, first maybe try on your computer for those of you having trouble to turn off the volume, but I'll just, I'll speak closer to the microphone and ask Tina to do the same. So, what I'd like to do now is just take an opportunity to start to address some of the questions that have been put into the chat mechanism. There are a few that have queued up and as Nancy and Tina have alluded to, I think I've frequently asked questions peace and incorporating some of this would be fabulous. So, I'm just going to first, since we're on the theme of the data preview portal, I'll just read you some of the questions, Tina. I think most of them will come your way and ask you to respond. So, one question was related to the cost for the data access and you indicated that there was no cost for graduate students thesis, but is there a cost for postdocs? At this point, I would say yes. Okay. So, I think that that's an excellent question. Okay. And then in the FAQ. Leave it with me and we'll put it on the agenda. So, great question. Thank you for that. And will elicit the applications and the status of those applications be posted on an ongoing basis on the CLSA website so that people can see what's happening and ultimately reduce duplication of effort? Yes. Right now there are already a number that has been posted and what we ask the applicants to put in their access application form is a summary that we can post on the website if their application is approved. So, we have some up there, but there are others that are not yet up there because they're still part of the administrative process and we have to tweak some of the wording. So, yes, absolutely that's essential because that's a very important point. I think, you know, if someone sees that someone else is working on something they're familiar with, it'd be great if they make the contact. They might be something different that they're proposing. Another question, will the data be presented relative to the Canadian Community Health Survey or the Canadian Health Measures Survey and Ontario or other provincial health surveys? Okay. I think this question was asking me this in terms of this presentation, I think. So, I think you know the answer to that. I didn't present it. We have done analyses in relation to the CCHS. I haven't presented them here and of course, and I think that where we have overlap, I think things are very, very similar. In fact, part of our, as I said before, part of our first sampling frame was the CCHS. We haven't done one relative to other studies at this point. As far as I'm aware, I mean, there may be other researchers and then the CLSA are trying to do that. And the, another question around specific data and again, when researchers, I did post the link to the CLSA data site so people can see the detailed questionnaire and such, but if you want to answer one question here, do you have data related to musculoskeletal disorders? For example, low back pain and did you do muscle strength measurements? Okay. So, I'm going to, I would actually ask this individual to go to the website and have a look at the questionnaire. Certainly in the telephone interview, clearly we have no muscle strength measurements. I think I'm going to say we don't really have a lot on that even in the data collection site, but absolutely go to the website, pull up the questionnaire and the measures that we use and you'll get a much better idea whether. Okay. Your question, it may be on the website, but it's around the cognitive impairment. Which criteria did you use for excluding or for excluding cognitive, those with cognitive impairment? It was happening over there, by the way. I did try to answer that I think in the middle that in fact, we use the same strategy that Statistics Canada uses in the CCHS. They train their interviewers. We use no specific cognitive screen, that's for sure. Tina, this is from Indra. Can I add something, one of your answers? Yes. Yes. I think the question that was asked about the low back pain in our comprehensive, the $30,000 one, there are questions in the disease symptom questionnaire if the person goes and sits there, that there are things about low back pain and also we have reasonable model performance testing, including grip strength. Grip strength. Okay. I was thinking, I'm getting, okay. Okay. Okay. Just getting back to the cognitive impairment. As I said, we use the same strategy that CCHS uses. Obviously, when people come in, we are assessing and we do a fair amount of cognitive assessment already. As I said, there are some people who self-reported that they did have cognitive impairments and they did have Alzheimer's disease. We had to stick with the same strategy that CCHS uses because we started with that as a sampling frame. I'm trying to flip through to see if there any others. Another one here, Tina, the data collection on falls that you do. Do you collect data on whether these falls were resulting in fractures or hospital admissions? I believe so. I believe so. I don't have the questionnaire off the top of my head. I can answer the second part. Right now, we are not verifying clinical events by access to medical records. The ultimate goal is to link with health administration databases, but currently we are not checking with medical records. Another question here, are linked data considered part of CLSA or does each investigator need to request previously linked data for his or her use? Okay. That's an excellent question. We have at this point in time only one linkage that's been made and that's with the air pollution data. We work very closely with whatever organization our individuals agree to link the data with the CLSA database to ensure that on both sides, whatever kinds of access agreements are required were covered. I think at our level, we make sure that whoever is making that request, we're in line with whoever is providing the data that we're linking as well as the CLSA. The goal is that individuals should be able to get it through us, but there may be exceptions where they have to go separately to get approval from the source of the linked data. It's going to depend on the linkage itself, I think. Parminder, I think this is a place where you might be able to add a word or two if you wear a headset. I'm just looking for the headset. Okay. I think the part of the question was in relation to data linkage with the provincial registries and many of you who know how the provincial registries, healthcare data registries work, it belongs to each jurisdiction. We have been working with the data stewards and some of the privacy commissioners across the country to figure out a way that we actually do a one single application that allows you to link data across different jurisdictions, and then these data are actually housed, whether it's with CLSA or some other entity where people can go and re-access that data for a different type of question. We are trying to work out a process where we would like to avoid that researcher every time there is a data linkage project comes up that they have to go and apply to CLSA and then apply to the provincial agency and get the data linked and once the project is finished, you actually give up that linked data. That is happening now, and we are trying to work out a process that we can do a better coordinated processing in a way that allows you to house existing linked data for the future projects. I think that was the intent of the question. Yeah, there is another question which relates to this also, which is will linkage studies requiring access to data held at ISIS in Ontario need to go through a separate approval process? I think what Parminder has said is that we are working on ways to make these things easier rather than harder. I think each one of these questions that you ask is actually going to lead into us saying how can we do this and how can we do this and how can we do that? At this point in time our goal has been to work with the ministry directly because if you let's say go through ISIS, then we have to send our data to ISIS. They do the linkage, they do the analysis because right now maybe in the near future they will have a mechanism but they do not have a mechanism sending data to a researcher for the purposes of analysis. So for that very reason right now we were having conversations directly with the ministry to see if we can set up a different provision to access these data that are available to researchers a little bit more freely to do the analysis. So Parminder and Tina are here. I presume what that would mean for a researcher who is putting together an application for instance to use CLSA data and they wanted to link it with provincial administrative data set through the open competition that it would be advisable for them to be connecting with you as they are preparing that application to make sure that the procedures that they're outlining for that linkage for the access and so on is in line with what's possible. Is that correct? Absolutely and I think it's important to note that you know we cannot release health insurance numbers outside to individual researchers so if anybody's thinking about that they should contact us sooner rather than later and we can help you know work on it together to figure out a way to get it done. Back to that we are also actually setting up a working group over the next few months that will engage in a pilot project in a coordinated cations in data access and data linkage with different processes with provinces and that will address some of the clusters that are coming out of the way from the audiences today how that will work. But Tina's right that they should connect with us if they have a data linkage proposal because there is quite a bit of a coordination that needs to happen in order for it to be successful. So I'll just add to that and something I didn't even mention here is that in addition to requests for data we get a lot of requests for letters of support for people who are putting in proposals and we are happy to provide such letters of support but it is very helpful if we can get advance notice that this is coming rather than you know two days before the grant is due because that helps us in two ways certainly it helps us have time to prepare it but it also allows us to perhaps provide some advice to the applicant if they have a misunderstanding of what might be available or doable within the CLSA. So sooner rather than later is kind of our motto. So two days before is bad news what are you ideally is this like two months ago? I think if someone I mean I just think of myself as a researcher if I'm going to be using a data source but I actually don't yet have access to I think as soon as I start thinking about this and saying I want to write a grant application I think that's the time to actually have a preliminary discussion even without a grant application because we might be able to you know correct a misinterpretation so that you don't go too far down the road. So as soon as you start thinking about it I mean I think for myself I'm happier to get a request and be able to say to someone yes this looks great here's some information that you might use or I don't think we can do that at all I will I would prefer to do that than to have to tell someone who's spent a month writing a grant application and has engaged a lot of different people and they have a fundamental they've missed something that they didn't realize about the CLSA. Yeah very helpful advice I think some of these people kind of hesitate because they're not sure that they have their ideas sort of you know really fully formed and so on but the strong advice here is sooner rather than later and and indeed I guess in that interaction with you there may be some other aspects people haven't thought about and it may help to shape the the approach that they want to take. Okay I'll go to another question here it was one asked earlier do you plan to replace those who are lost so I guess the participants who drop out or are not taking part in the study for the for the subsequent follow-ups. Okay we don't have a plan in place to do that at this point I think that that's something that is going to be rediscussed at each time frame I mean we all know that the scientific methodological challenges of doing that but right now it's a closed cohort you know you started a particular point and then we watched the cohort decline in size over time. Clearly some of our end points are going to depend on on getting some of those negative end points but right now there is no specific plan certainly we've discussed it but right now there's no specific plan. Okay thank you Tina. Is there a plan to ask participants about organizational factors that may have contributed to early or involuntary retirement? I'm gonna have to ask what you mean by organizational factors. Yeah because the person I guess Sarah if you if you want to clarify your question and then we'll come back to it I'm just scanning to see some other questions here. Yeah I would just if I can ask for the retirement question we do ask people questions about reasons for their retirement and one of the reasons tends to be whether it's related to the workplace changes in workplace organizational changes that are cause of that early retirement let's say. Yeah and Tina what are the criteria that applications are evaluated against in I guess this would be the data and sample access. Yeah okay so so what we've been doing as so far I mean obviously one of the things we have to look at is whether whether the request fits in within the CLSA consent that the participants have consented to so we do that obviously you know there are a bunch there are researchers every everyone on the data and sample access committee as a researcher. We get a mixture of applications so we get some applications that have already been reviewed and approved by a granting agency and at that stage we don't really need to do scientific reviews. We get applications that have gone through protocol defenses for for students so we don't have to do scientific reviews. Sometimes we get applications that have not had when we ask have not had any kind of a scientific review so we do do a scientific review within the compliance of the expertise of the committee because we and oftentimes what happens if the committee have some questions is they come back to the applicant as recommendations you know don't perhaps you might want to consider for example these variables of confounders but fundamentally if it's clear what the applicant is proposing to do it's clear that it fits in with the consent you know what variables they want are available in the CLSA then generally that kind of an application would be approved so there's not a rigorous major scientific review because for the most part that's done elsewhere. I see the next question is interesting will researchers be tempted to recruit graduate students to request the data so that their professors or supervisors can have the data for free? I just say I hope not I think I have I don't expect my colleagues will do that. Okay and I've got Sarah clarified her question around the organizational policy or supervisor behavior that made it less appealing to continue working so I guess something that might be in the free text yes yes so that's in there Tina? I believe so okay yeah so maybe Tina you could just expand on what the plans are then to release the free text you talked about the alphanumeric responses but will free text eventually be available as well? Yes it's not it's not all of the open text that isn't available the major components of the open text that are not available right now for the tracking is the labor force the the occupational coding that's the major part most of the rest of it has been coded some of it is going to be available as open text because there are some things as long as we make sure that we're not violating any confidentiality we would really see this open text others have been coded in in natural coding categories there are people who are interested in doing qualitative analyses on some of the open text that is primarily the labor force that the occupational coding that has not yet been done the other something Tina around the section of the 60 minute tracking questionnaire on alcohol use are there any questions related to prescription drug use or illicit drug use? In the tracking right now we do not have a medication module but we have added medication use to the maintaining contact for the tracking participants so that's been asked that is being asked right now illicit drugs I have to look at the questionnaire I know we don't ask anything about illicit drugs and so the tracking 60 minute as Tina mentioned there are some questions in the maintaining contact but most of the prescription drugs are to be obtained through linking it with drug databases for supplements because mostly people over the age of 65 or people who are in social assistance that's what the most of the provinces do and in some provinces it's available for younger people and another question about what's in the the data asking if data regarding recreational activities community programs the arts and exercise is in there okay so in the tracking the physical activity questions are being asked in the maintaining contact so are not available in this first release and that was actually a comment that a number of participants wrote to us and said how come you didn't ask me about my physical activity and that was really a question of space at that point but it is being asked in the maintaining contact and the other activities are included some of those would be included in the social participation component of the tracking okay thank you Tina another question around the cost for data access and I know that you've mentioned this is still something that you're you're discussing within the clsa but some comments about the the cost for the data access and that many countries have developed similar studies but don't charge these kind of data access data sets costs do you plan to charge the cost continuously as the survey gets stable or is it just the the initial setup this is a really hard question for me to answer because as the director was just going out to center you know I have 1.7 full-time equivalent and you're underfunded for for for this activity so part of these I mean this is a cost recovery activity and until we find the alternative or additional funds to support the whole data access and data release process then I think we're going to struggle with whether or not to to charge and I think and I'm speaking for myself just in terms of getting the work done where I am if we don't have some additional funding for this either through cost recovery or other sources it's going to take longer for applicants to to get their data because we're going to have an increasing number of applications and not an increasing number of staff to prepare them so this this is a you know I throw that out there as the reality in my daily reality I would love to be able to release these data at no cost and I and I if I'm not mistaken many of the other studies around the world actually have major funding for data release that that we don't have at the CLSA so I share your share your pain and we are discussing this I raised it myself here even in this discussion so we are discussing it okay I'm scanning the chat and I think I've addressed all the questions that have been listed so if I haven't please just type type it back in if you don't mind and a couple of people have asked if the slides would be made available after and yes indeed they will and I believe the session has been recorded so that recording could be made available to you or your colleagues as well yeah I did want to answer one question which I saw as I was going by about how come there are 23 people with dementia just remembering this is a telephone interview and it's a self report at this point in time so that that's as much information as I have I mean maybe the screening process isn't as good as we would like it to be or people are misinformed us to or miss her the question so it's really self-report and I think one other question here who was writing from Hong Kong or who's involved at a Hong Kong Polytechnic University so can somebody who is working outside of Canada access the data and and whether it be the same procedures or is it different for the alphanumeric data so let's just talk about the tracking for the moment yes these data are accessible to researchers outside the country through the same process I just don't I'm not quite sure how the clsa access agreement is going to work internationally but you know if we get an example we'll sort it out for the link for linked data particularly with respect to the health registration databases or health administration databases that at this point in time we're not able to share but as Parmenters already mentioned we're trying to work on a strategy to be able to do that but the pure alphanumeric data the self-report in the questionnaire yes are theoretically available if you are planning to put in an application from outside Canada please give me the heads up so we can get ourselves ready in case there are additional questions that we have to address okay and one final there's a question that is can someone request data by occupation is that possible quest data by occupation well um we have limited available information because I said that the open text are not yet coded so if someone puts in an application and they what they want to do is to look at certain occupations and health or whatever it is that you're interested in and certainly put in the proposal and say these are the the variables that you want and then you will get the raw data and you can do the analyses yourself no I was just going to clarify one comment in relation to access to data outside the country I think if you on our website there is a data access policy and we have a justina mentioned we have a caveat in relation to because even though technically it is possible but some of the ethics and consent issues have to be worked out for us to figure out how we release these data to outside researchers I think alphandomeric data would be relatively easy once we work out the process but the biological samples are actually quite tricky from shipping out of the country especially when you have provinces like Quebec and Newfoundland where there are founders populations so it's a work in progress from our side we have not shipped data and in our data and access sample policy we actually say there's a caveat that we are in process of working out what the process of sharing that information would be okay thank you permanenter so just as we wrap up the webinar I would like to invite both Tina and Nancy to make any final concluding comments and just to say that these questions can be rolled into a frequently asked question document but I would encourage you to forward or to communicate with those on the speakers today I'll post their contact information you'll see it on the screen there now so I'll start with Nancy if you want to make some concluding remarks to Tina for a very thorough presentation and clear explanations and to permanenter for jumping in there with some helpful explanations and to all of you for joining us and for some excellent questions it's exactly these kinds of questions I think we need to sort of proceed to the next phases as we get the the imagination of a fantastic researcher some out in Canada on ways in which this data might be used and that's exactly you know as a funding agency what we're looking for the the success of the CLSA we're already seeing that but the extent to which it actually gets used as a platform for a lot of important questions will be that the market success for this initiative so I think this is just a start of a discussion and just a big thanks for me for taking the time to join us and to Tina and Parminder thank you and as Tina any concluding remarks or Parminder I just wanted to say thank you for the opportunity to do this and I really do reiterate that I'm very happy to take questions you have my email address here because it's much better for all of us if the questions come sooner rather than later it helps us to plan it helps us to it gives us on ideas to think about that we might not have thought of and hopefully it will make your life easier in your in our goal which is that you should be using the CLSA data as soon as possible thank you so we'll we'll thank you all for participating I hope you found this webinar to be useful I think that it's just fabulous that the data is available now so encourage you all to contact the CLSA with your questions so thanks again everyone and have a great day