 Well, I'm very excited to be with you today to do this webinar, to give you an update on the CLSA, and I'm very pleased to present it on behalf of Carmen Durena and Christina Wilson and the entire CLSA research team. It's a really exciting moment for us at this particular time. Well, to be honest, it's another exciting moment for us at the CLSA. There's never a dull moment at the CLSA. But it's a really important time in our history as we release for use the baseline data on all 50,000 plus participants for use by the research community. So the focus of my presentation today, as you can see, is really about the practical. It's really going to focus on how to use the data and how to apply for the data. And I hope it will be useful to you. I will, and I apologize in advance, go over some of the baseline information and the study design and content. I think it's essential to do that just to orient everyone, but I know there's lots of people on the call who've heard this before. I'll try and go over it fairly briefly and then get into the really exciting stuff, which is how to access the data. So as you know, the CLSA is a strategic initiative of CIHR. And at its inception when we were developing the study, there were more than 160 researchers and collaborators from 26 institutions. That number has increased dramatically now. But when we were very first designing it, that was the compliment that was involved. It is highly multidisciplinary and we would go so far as to say interdisciplinary and hopefully even transdisciplinary. And involves elements from biology, genetics, medicine, economics, epidemiology, the whole gamut of disciplines that have an impact on aging. And it really is the largest research platform of its kind in Canada, given its depth and breadth. To remind you of the study design, we initially planned to recruit 50,000 men and women who were 45 to 85 who were living in the community. And those people were followed in two ways. 20,000 were randomly selected from the 10 provinces and they were followed by telephone and completed a questionnaire. Another 30,000 were randomly selected from within 25 to 50 kilometers of 11 sites in seven provinces across the country. And those people were followed both in their home. And then they came to a data collection site where they provided physical assessments and also bloodnearing. The design is to follow participants for 20 years. We do a full follow-up every three years and we do a maintaining contact in between. At the baseline, we actually went back to participants at 18 months and collected data from them. We have now changed that so that in the second wave or sorry, in the first follow-up, we will collect all of the information when we go back to them at once. And then the intent is to link to numerous administrative databases over time. This just gives you an idea of where we are now. You can see that the baseline data collection was finished in 2015 and we're midway through the first follow-up at this point in time. With respect to recruitment and I put this slide in here because I think it's very important. One of the things that is somewhat unique to the CLSA is that people were randomly selected to participate. So we use three separate sampling frames but all of them can be rolled up. We partnered with Statistics Canada initially and recruited people through the CCHS Survey on Healthy Aging. We also partnered with Provincial Ministries of Health and utilized the health card registration databases and recruited participants that way. And then we supplemented that with random digit dialing. What this led to is a study that is both national in scope and has a representative sampling frame. And if you look at all the blue dots, that just indicates that people were randomly selected from each of those provinces to participate in telephone interviews. And you can see in red the data collection sites where people participated in home interviews and came to a data collection visit. Another thing about the CLSA that makes it quite innovative and also very unique is that it's completely, the data is completely captured electronically. So participants provide questionnaire data, lists they're recruited into the CLSA and whether it's done by telephone or whether it's done by home interview, it all gets stored at the statistical analysis center. You can see also that there is a data collection site visit and there's a lot of processing that occurs in terms of those physical assessments and also in terms of the biological data that's collected, the biological data, the blood and urine is stored at the Biorepository and Bioanalysis Center at McMaster. Eventually all of that data will become alphanumeric once it is analyzed. Some of it may actually never be alphanumeric, but what will become alphanumeric then goes to the statistical analysis center and that's where the data gets disseminated to researchers. I'll spend a little bit more time on this later in the presentation, but just to give you an idea of the depth and breadth of the information that's collected in the CLSA, you can see that there's a wide range of questionnaire modules. Things ranging from education to vision to cognitive status to depression to satisfaction with life, caregiving, retirement planning. And also too, you can see that we have a veteran identifier. So we actually have a fair bit of information on veterans in the CLSA. People who come to the data collection site, we also do a wide range of physical assessments. And again, this is done in 11 sites across the country. It's all completely standardized. We do physical assessments like height and weight and BMI. We have bone mineral density, body composition and aortic calcification. We have blood pressure, ECG, carotid intimamedial thickness, pulmonary function, both vision and hearing tests, as well as performance tests. We also do a neuropsychological battery. And as you can see here, we collect blood nearing as well. There are 42 aliquots of blood that is stored per participant. We do some basic hematological tests on site, and those results get recorded. But the remainder is actually processed and frozen within two hours and then gets shipped weekly by cryo shipper to the Bioreplosatory Center at McMaster, where it's stored, as you can see, in these large liquid nitrogen tanks for future use and analysis. I do want to just give you a little bit of an idea where we are with respect to the first follow-up. To be honest, that's the subject of an entirely separate webinar, but I'll just give you a very brief idea of some of the changes that we made at the first follow-up. So there was a number of new areas of content that we added. And you can see in particular, we've added an entire module on child maltreatment and also elder abuse, and that was in conjunction with the Public Health Agency of Canada. There's a number of other things that we've added, things like unmet healthcare needs, workability. We've added a question on sexual orientation and gender identity. We've also asked people about their own subjective sense of cognitive decline. The other thing that we're working on is a decedent questionnaire so that when people die, we will go to their next of kin and ask them about the last three months of a participant's life. The other major issue with respect to the follow-up that I want to make you aware of is that we have engaged in a number of accommodation strategies. So as you can imagine, we had a fairly rigid criteria about who could enter into the CLSA, and so they had to be living in the community at baseline. They had to be able to come to a data collection site if they were in the comprehensive arm of the CLSA. Obviously, they had to be within the age range, but they also had to be cognitively intact in order to sign a consent. As people age within the CLSA, we are doing everything that we can within our ability to allow for flexible participation and to be able to accommodate people so that they can stay in the CLSA over the long term. So there's a number of strategies that we've had to employ to address things like people migrating out of the area if they're in the comprehensive side and come to the data collection site. We had to deal with cognitive impairment, and so we put a whole process in place around getting an indication of participants' wishes for how they would like to participate in the future if they're no longer cognitively able to, and put in place a process for getting proxy consent. There are all kinds of accommodations that we've made with respect to physical impairment, and that includes developing a DCS at home visit and also numerous strategies to deal with sensory impairments like hearing loss or vision loss. And the other aspect is that although people had to be living in their own homes when they entered into the CLSA, as they move into institutions, we will do our best to follow them. And there are a number of strategies that we have employed to be able to follow them as they go into institutions as well. What I really want to get into and spend the most time on is how to access the data, how to access data and biospecimens. And this is, I think, a very timely thing to do because we do have a lot of data now available. The fundamental tenets that we work with in the CLSA, and these are obvious, these are fairly obvious, is that the rights and privacy and consent of participants must be protected and respected at all times, that the confidentiality and security of both data and biospecimens must be safeguarded at all times. And it's also important, particularly for the biospecimens, that they're, well, I shouldn't say that. For both the CLSA data and biospecimens, there are resources that we want to be able to use optimally to support research to benefit all Canadians. But the reason I highlighted biospecimens in particular is because they're a depletable resource. They have to be very conscientious about how we utilize those over time. And given that our major objectives in the CLSA are to look at longitudinal aspects, we need to make sure that we have this information over time. Another fundamental tenet is that there is no preferential or exclusive access to the data by anyone. The PI, the CLSA team, and as well as our partners and stakeholders. So with respect to who can apply, basically researchers who are based in academic settings and research institutes in Canada are eligible to apply. International researchers may collaborate with Canadian researchers in order to access data or biospecimens, as long as the data or biospecimens are analyzed in Canada. And you can see that I put an asterisk there and said that that piece is currently under review. And it is our intent to be able to release the data, certainly the data first, potentially biospecimens, but we have to work through all of the issues that are involved. For the actual alphanumeric data, we suspect that this will be resolved fairly shortly. And also, I would like to point out that both graduate students and postdoctoral fellows based at Canadian institutions are eligible to apply for the data. Graduate students have to apply under their supervisors, but postdoctoral fellows can apply on their own. So the data that are currently available, there are in total 51,338 participants in the CLSA. And baseline data from these participants is available to the research community this spring. So that includes all of the baseline questionnaire data, as well as the majority of physical assessment data and hematological biomarker data from 30,000 plus participants who came to the data collection site. And I'll be very specific as we go through as to what data is available, but also to you will be able to go onto the website and see what's available. So there are a number of elements, and I separate them out like this for you because they're also separated out in the database on the website. So I just thought it would make it a little bit easier for you to figure out. So there are 60-minute telephone interviews that were done with the 21,241 tracking participants. And you can see here all of the questionnaire modules that are contained in that 60-minute telephone interview. There are also in-home-based-to-face interviews that were done by 30,097 comprehensive participants. So we went into the home and collected this information. You'll see that there's a lot of overlap with the previous set of information. So in fact, it's available on all 50,000, but it's separated by database at the moment. You can see here, this is the data that's currently available for people who are comprehensive participants and came to the data collection site. And the list is slightly different than the earlier list that I showed you. There are some aspects of the data collection site visits that will not be available for release right away. But you can see that in terms of physical assessment, there is height, weight, waist-tip ratio, blood pressure, ECG, spirometry, hearing, 4-meter walk, time-dup and go, standing balance, chair rise, visual acuity, tenometry, and grip strength data available. And this is all data that's available as alphanumeric data. There are no raw images that are being released at the present time. You can see in terms of biomarkers that we have hematology variables, and I'll show you those in a sec. There are also questionnaire-based information that comes from the data collection site visit. So there's information on social networks, social support availability, social participation, as well as disease symptoms and contraindications for some of the tests. And those contraindications are also useful variables. The neuropsych assessments have not yet been released for the comprehensive, but they will be released very shortly. They should be released by the fall. And so if you are thinking about putting in a data application, it is possible to request the neuropsych assessments as well. They're not currently available on the checklist, but you can add them in the comment section. I've just listed the four tests here that are also available in the tracking component, but there is in fact a larger list of neuropsych assessments that will be released this fall. And here you can just see a list of the hematological data that's available on comprehensive participants. So white blood cells, lymphocytes, monocytes, red blood cells, transcripts, platelets, a number of factors that may be of interest to you. And again, this is all as alphanumeric data. Now as I said earlier, in the baseline we went back and did a maintaining contact interview where we also took or got 30 minutes worth of information from participants as well. And it's both the first set of data and this 30-minute interview that comprises the entire set of baseline data. And so this was done on all 51,000 plus participants. And you can see here that there's some information that's very essential to you as you might want to analyze the earlier data set. So things like physical activity or built environment or wealth or oral health, a number of variables that will be very key. So this just summarizes the data by data set. And again, I show it to you in this way because this is the way that you can search it on the website. So there's the tracking baseline 60-minute telephone interview and the baseline tracking maintaining contact interview. There is also the comprehensive baseline in-home interview and data collection site visit and the comprehensive maintaining contact questionnaire. I want to spend some time now just going over how you would actually apply for data access. And this is all on the web, but I think it's useful to review it and hopefully it will be helpful to you. There's a large amount of information on the website and I would encourage you to spend as much time as you can going through it. But hopefully I'll give you enough of an orientation now that it'll be a lot easier when you do it. So the first thing that you should do really when you're preparing an application is to consult the data and sample access policy and guiding principles because you really do want to be aware right at the outset what can and can't be done with this data. You will also want to review pertinent sections of the CLSA protocol and also look at the CLSA questionnaire. And again, you know, there's such a large volume of data available. It can be quite overwhelming. And so I do encourage you to spend some time with it because I think it will help you orient yourself a lot more when it comes to actually preparing the application. The other thing that you can do is visit the data preview portal and that's also on our website. And what it does is it allows you to search databases directly. So I'll go through this in a minute with you. But it's very, very useful because you can see exactly what's in there and how it's completed. So if you want to know how many people in the CLSA report that they have sleep problems, for example, or report that they have cardiovascular disease, or report that they have some chronic disease, or you want to look at education level. You can go in and see exactly what proportion of CLSA participants have responded to these, how they've responded to these questions. But really the first actual step is to complete the data and or biospecimen request application. And I will show you that again in a sec. Just as a note up front, we will not share identifiable information. And so that includes six digit postal codes, names, and contact information. Any data that you will get will have an ID and all of the rest of the information, but you will never be able to directly access participants themselves. And I'll just give you the website that's French. If you have queries about the alphanumeric data specifically, you should send them to access at clsa-elcd.ca. And if you have queries related to the biospecimen, and in this case I'm referring to the raw biospecimen, you should send them to bbc at clsa-elcd.ca. So this is the front page of our website. And again, I would encourage you to spend some time on it. I think that there are two bars, as you can see the bars up on the bar at the top that have been circled. The researchers bar and the data access bar. That will be the most useful to you as you're preparing an application. So the very first thing that you want to do is review the application process. So you can see that under data access, the data access bar, there is a bar that says data application process. And then also data application document. And so I would probably start here. You can see that I've also circled the link to the data and sample access policy and guiding principles. And again, I would encourage you to start there. There are two specific data application documents that you need to complete. One is the actual application. And I've just put the front page of that application on for you here. The other is the data checklist. And again, I've just put the front page of it on for you here so that you can have an idea of what it actually looks like. These are on the website. They're downloadable forms. And they're both required for your application. So again, one of the first things that I would suggest that you do is actually go and look at the protocols. So if you go under the researchers bar, you'll see that the protocols are right on the website. There's a shortened version, which is the executive summary. And then there's the full study design at baseline. And again, you don't have to read the entire protocol, but you can search the protocol for the sections that are most relevant to you. I would also encourage you to use the data collection tool. And I think it's really important to use the data collection tool in conjunction with the data preview portal. And so the data preview portal is really good, but it can be confusing. And if you see how the data is actually collected by questionnaire, I think it will be a lot easier for you. The interesting thing is or the helpful thing is that you can actually download the questionnaires. And not only can you download them, but you can actually search them for any terms that you're interested in. So you can search the entire questionnaire for nutrition or food or poverty. And you will get variables come up throughout the data set. But you can see it in the format that it's asked of the participant. Then I would suggest that you go actually into the data preview portal. And again, this is under data access. And the data preview portal really is the gateway to access the data. And it has a variable search mechanism that allows you to search and get simple descriptive statistics. You won't be able to do anything complex, but it really is very useful to see what the data looks like. It's currently only available for the alphanumeric data. So once you get into this, once you get into the data preview portal, you want to click on data set. And it will take you into the data preview portal. And I'm just going to give you a couple of tips now. I don't want to pretend like I'm the expert in the data preview portal. And if I thought I was an expert before, we just moved to a new version of the data preview portal on Friday. And I'm still learning my way around. But it's still an extremely useful tool. And I would encourage you to spend some time with it. It's on a backbone called Mica. And Nailstrom has developed this for us. And it is used by a number of cohorts internationally around the world. And it allows all of the cohorts to record their data or have a database that's in a similar format. So sometimes it doesn't seem particularly useful to us in that it doesn't mirror the questionnaire exactly. But the nice thing about it is that when we use it across data sets, it will be very, very helpful to us. So this is just the front page here. And you can see that there is a variable search tool. And it really is we use it to locate items that we're interested in. We also have a link for variables not yet available. And I will just go through it quickly. But you can see that primarily the data that is not the variables that are not available to you yet are labor force variables and medication variables that have to be coded. These are open-ended text. There are other labor force variables and medication variables in the available data set. But not specifically these ones. But you can look through this first because it's much smaller. If you then go into the variable search, you can see that you can get a fair bit of information. And I will just point out that there are some smart tips for you to get you started right at the very beginning. But this is what the preview, the data preview portal looks like. So you can see that there are, so you can see that right now we've got the comprehensive maintaining contact questionnaire, the comprehensive questionnaire, the tracking maintaining contact questionnaire, and the tracking main questionnaire. As all of the questionnaires are up there, and you can see that there's 5,197 variables. And all of those variable names are currently, will currently be listed. So there's the variable name, the variable label, and you can see which data set it comes from. If you now click on Data Set over on the left-hand side, and I think you do have to actually click on Data Properties and then acronym as well to bring down the box that shows you which data sets are available. So there's the four data sets, as I said, the comprehensive maintaining contact questionnaire, the comprehensive main questionnaire, the tracking maintaining contact questionnaire, and the tracking main questionnaire. And you can click on or off of those boxes as you like. And you can see here that just the comprehensive data sets are clicked. And so then just the comprehensive data collection, comprehensive data shows up. And you can see now that there are 3,362 variables. And under Data Set, all of them come from the comprehensive. In terms of searching, there are a number of ways that you can do it. So again, we're under the Variables tab on the left-hand side. And you can see at the top, you can either use the search bar, and the search bar gives you areas of information or scales. You can use the search fields on the left-hand side. And so you can go by a variable label, like food, or you can go by a variable name. But if you've gone into the actual questionnaire and you know the variable name, you can just type it right in there. You can also use the drop-down menu on the left-hand side. And that gives you areas of information and also construct. And again, I would suggest that you play around a little bit because it can be a little bit hard to not figure out, but to really fully understand. So for example, let's say we can see here that we've typed in depression, and it will give us areas of information. So when we type in depression, areas of information come up. And you can see that we've got the CESD scale and also a scale for psychological distress and emotions. The areas of information really just group together variables that are around a common theme. So these ones are scales, but they can also be categorized around a common theme. But in order to pick it up, it has to be coded, and not every single thing gets coded into an area of information. So just to be aware of that and utilize different mechanisms. You can see here, this is searching by variable name. So now under name, we've just typed in DEP. And what will come up is, for example, variables that come from the CESD depression scale. You can see that there. And again, this time, we'll only get 12 variables coming up. We can also search by variable labels. The thing about going with variable labels is that, again, these have to be coded, and you're not likely to get an exhaustive list. So here, under the label depression, you can see, again, there was a label match for 92 variables. I just want to highlight quickly that you can use an and or function. And so this will allow you to search, for example, we've used depression here. And what happens is if you enter it as an area of interest and also a variable label, then you put it and you're going to see that you only get one variable that comes out. And so it's both identified as a variable of interest and a variable label. If on the other hand that you do it by or, you can see that you'll get much more variables. So this time, they either have to have the label depression or they're part of the psychological distress and emotion area of interest. And in this case, you'll get 120 variables being reported back to you. And you can see over on the right-hand side that by using the advanced basic link here, you can switch how that operator works. And lastly, once we get here, you can see that we get some actual descriptive statistics. And you can see at the top, and I apologize, I know it's not all that clear, but you can see that it gives the question for you. We typed in depression and what came out is from the comprehensive database, has a doctor ever told you that you suffer from clinical depression? And you can see below under statistics that 16.4% of comprehensive participants responded yes to that question. And so this can be very, very useful information to you as you're planning your study. I know this has been very, very quick and very, very brief, but I hope it's been useful. If you do have more information under the data access bar, there is an FAQ section which goes through a lot of this information and should be very useful to you. I do want to just go through the data access feeds with you. We operate on a partial cost recovery model. It's $3,000 for a straightforward alphanumeric data set, and that's for all 51,338 participants. If you require more complex customization, then there are additional fees. There is no cost to graduate students who use the CLSA data for their master's thesis or their PhD thesis. And postdoctoral fellows are eligible to apply for one-three data sets. And it is our intention that if you use the data and you derive variables that would be useful to others, that we'll then return those derived variables to the CLSA data set as appropriate. This just gives you an idea of the process of once you submit an application. So when you first submit an application, it goes through an administrative review at the National Coordinating Center. That's just to make sure that the application is all completely filled out. And it also goes for a quick statistical review at the Statistical Analysis Center. And again, that's to make sure that the variables that you've requested we actually have and that kind of thing. It then gets sent to the Data and Sample Access Committee. And the Data and Sample Access Committee review the application and make a recommendation to the Scientific Management Team. The Data and Sample Access Committee does not do a full scientific review on applications if they have already undergone scientific review. If they haven't, then they will do that for you. Once that happens and your application has been approved, then we require a Data and Sample Access Agreement to be signed. The Data and Sample Access Agreement is something that is signed between your institution and McMaster as the host institution. And that's the only part of this equation that we have no control over. It may take a little bit of time to get the agreement signed between the two institutions. Once we have that signed and we have proof that you have ethics, then the request goes to the Statistical Analysis Center to prepare your data set and deliver it to you. And that process is relatively quick. It's usually done within, I think, 7 to 10 working days. And then once you have the data, you are available to utilize that data on your desktop. You have to be aware of the Access Agreement that you sign. And there are very strict guidelines about how you can use that data. It has to be in a locked room and a secure location. So just make sure that you understand the requirements very strongly. And then at one year, we will ask you for either an annual report or a final report. I do want to highlight to you that there is a funding opportunity to analyze the data set currently available. The Canadian Institute of Health Research has a catalyst grant available to researchers at the moment. In total, there is $1,205,000 available to fund up to 17 grants. The grants can be $70,000 for up to one year, and it's for Alton numeric data only. And I just wanted to...the application is on ResearchNet, but I just wanted to make you aware that it does include a CLSA data request, data access request application as well. We also...the next...you can also apply just directly to the CLSA to use the data. And the next deadline for applications, I believe, is October the 17th. I just want to remind you of my co-conspirators in crime, Tina Wilson and Carmen Durena. And obviously, the CLSA cannot be done without a huge contribution from numerous, numerous people. These are the operations committee and the scientific leads. And anytime you put a list up with people's names, you know that you run the risk of not mentioning somebody really important. But these are the PIs, the site investigators, the working group leads, and key co-investigators. We have a large number of CLSA funders and partners. And of course, we could not do this study without our participants. So, thank you. I understand from Mark there's a number of questions. So, I hope this was useful and I'm happy to answer any questions. Great. Thank you very much, Susan. Yes, there are some questions. I think some of them we can answer fairly quickly. So, let's start going through them. First question from Wasem. Is medication use coded using drug identification number or other coding system? You can just pretend just one of these two, Mark. It's coded using drug identification number. Great. And there's another question. Will the webinar be made available? Yes, we'll have a slide on that shortly. So, stay tuned. When will data from the first follow-up be available? Good question. We won't finish collecting data until mid-2018. So, I would say that at the very earliest, it would be late 2018, early 2019. Great. What were the baseline exclusion criteria? So, off the top of my head, you have to be in the living in the ten provinces. Individuals who were on reserves or crown lands or in the Canadian Armed Forces were also excluded. Susan, any others that I didn't remember? You had to be living in the community at base lighting. You had to be not cognitively impaired. That's my closer to importance. Community dwelling and not cognitively impaired. Are the data going to be accessed through data research centers? I think that this question came early on in the presentation. And you already answered that, so you apply directly to CLSA. There is some talk about putting some data in the data research centers. We haven't been...we are in conversation as to whether we will do this. But one of the things that we wanted to do was make the data more accessible to everyone. And that's why we've gone this route directly. Which isn't to say we can't use the data research centers as well, but it requires some working hours. Great. Another question. Can you provide a brief overview of the short diet questionnaire from the comprehensive component? No. I think it would be much better time spent to look it up in the questionnaire. It's on the website. Yeah, that's right. Sorry. Go ahead. Sorry. No, I was just apologizing for saying no. Right. The short diet questionnaire it contains just really briefly. It contains several questions asking about your frequency of consumption of various different foods. So it could be things like poultry, white meat, red meat, the stuff that you drink. It's a very intensive questionnaire off the top of my head. I can't identify all of the various food groups that it asks about. It's very comprehensive. So you're asked, do you consume this particular type of food? And if yes, what is your frequency of consumption? And is that daily, weekly, et cetera? But yeah, the questionnaire is available in the Data Preview Portal for viewing. So you can go to it. And Susan has already provided information on how to access that information. Are there any differences in questionnaire contents between telephone interviewing and in-home interview? Are the contents similar? And I think I can answer that very quickly to say that there is overlapping contents. So everything that we ask in the telephone interview questionnaire is also asked at the in-home interview. But there are some additional questions in the in-home interview or of participants who go to the data collection sites. So for example, everyone is getting the REI, mental alternation tests and animal naming tests. Those are cognitive tests. But people who are in the comprehensive component are getting additional cognitive questions. So I think unless, Susan, you have something to add to my answer, the best way to understand what the differences are is to go to the Data Preview Portal to see the questionnaires which are available. Yeah. And I would like the data, I would go to the actual questionnaire because you can download the questionnaire, you can search by the questionnaire. Once you're familiar with the questionnaire, then it's good to go to the Data Preview Portal. It's hard to go to the Data Preview Portal right away because it doesn't run through the questions in the way the questionnaire does necessarily. Yes, that's right. I keep thinking Data Preview Portal because I'm on it a lot myself. But no, you can download the actual questionnaires and that would be a great starting point. It appears serial biospecimens will be collected every three years. And the guess is that we could confirm that that's the case. Participants in the comprehensive component will visit the data collection site every three years. And if they have consented to the donation of biospecimens, they will give a blood or urine sample every three years. Yes, they will. We won't always process it in exactly the same way all the time because, for example, there's some genetic pieces that we don't need to keep doing over and over again. But there are other things like metabolomics or epigenetics or the hematological markers that we do want to have repeated. Is there a special procedure to request for linkage with administrative data such as hospitalizations and deaths? It's a very good question. At the moment, we're working very closely to try and create linkages with administrative data so that you become able to request the administrative data and the CLSA data at the same time. We're working closely with Kaihai. We also have relationships with all of the provinces. We don't have it worked out completely yet. At the moment, and specifically for the call by CIHR, you can only request alphanumeric data, the alphanumeric data that's available. There is no opportunity to link to administrative databases through that call. But if you would like to link within province to an administrative database, what I would suggest is that you get in touch with us either through the access or the info line. Great. Okay. So will the CIHR CLSA catalyst grant support access to biospecimens? The answer is no. It is only for alphanumeric. That is questionnaire-based data. Let's see. How long will it take for the application process? I guess that's the data access application process. Susan, would you know what the average timeframe is from submission of a request to getting an answer? It's very hard to say definitively. If I had to give an average, I would say about three months from the time that you submit your application to the time that you get your data. So you can see that it goes for the administrative and statistical review pretty much right away. But then there's a little bit of a timeline as the data and sample access committee reviews the application. Then they actually meet. Then there's a turnaround time when they have to make the recommendations that goes to the scientific management team. That whole process takes about six weeks. But where it gets hung up and where we can't guarantee the timeframe is around signing the data and sample access agreement. If I could give anybody any bit of advice, that's the place where you have to be completely on top of things because it can fall through the cracks between institutions. McMaster is really good because they're used to doing these all the time. But your own institution may not be, and you need to be really engaged in that process. Again, once that's signed, it's a very short period of time before the data set can be prepared for you and released to you. Great. Does the project require approval from CLSA before it can be submitted to the CIHR funding call? And I believe the answer is no. You don't need prior approval to apply to CIHR in August for the catalyst. Is that correct, Susan? Okay. Here's a comment. Someone has received this data earlier. Do we automatically get, this is an individual, they've gotten data from the telephone sample. Do we automatically get the rest of the data from the in-person group as well? And I would imagine the answer is no. You would have to submit a follow-up data access application. Is that correct? Yes, you would. Okay. So Andrew Wister, one of our local principal investigators from British Columbia, he's asking, he says, is there a glitch in the search function in the data preview portal? And then he talks about some issues that he had. So we'll have to look into that. I would just, let me just say for a sec that for those of you who are used to using the data preview portal, we did upgrade it on Friday so that it's a newer version. It's actually easier to use but it's different than it was before, slightly different. So some of you may have, you may just have to adjust to getting used to it. But as far as I'm aware, there's no glitch. I've been using it a lot this morning and it seems fine. Okay. Aside from the list of tests provided today for the biospecimens, is there a full list of tests you intend to conduct in the future or does this depend on requests from potential investigators? That's probably referring to analyzing of the biospecimens, that question. Well, I don't really know how to answer that. There is a full list of all of the tests, the physical assessment tests that get done and the hematological analyses that get done and they're on the website. There are large, so there are also a number of analyses that we're going to be doing and funding for to do as part of the first follow-up. So we will be doing some genetic tests. We will be doing some epigenetic analysis. We'll be doing some metabolomic analysis. Those will not be available until 2018. Great. Thanks. When will the titles or topics of approved projects be released to researchers who have made a primary application? We'll be released to researchers who have made a primary application. So all of the topics of approved projects are posted online and you can go there and see them. I don't know if there's anything you want to add to that season, but they are available online. Yeah, no. There are a number of projects that were submitted for the, I think it was the March deadline that will be, the results will be conveyed to applicants very, very shortly. And then there are a number of applications that came in for the June deadline and they will be reviewed or they have, I'm getting confused now. Yeah, they will be released to, the results will be released to investigators shortly. Great. Great. Is there a variable to examine rural versus urban? There isn't currently a variable for rural versus urban. And it is possible to generate it, but we actually don't release the full postal code. If someone is interested in categorizing that, we can, well, actually, I believe that we have started to do some work on that. I actually have to respond to that individual person myself unless you know the answer right now, Mark. Well, I can tell you what I did. I was given access to the first three digits of the postal code and using that information, you can categorize urban rural, but that's based on Canada Post's definition of urban rural. Right. And so upon request, we can release the first three digits of postal code, but it's not part of the regular data set. It requires generating itself. And I do believe that some people are doing this. The problem is, as you see, there is, you know, we can return some of those derived variables to the data sets, but people haven't finished analyzing their data yet, and we couldn't add it to it till the next wave. So I think people will have to generate it individually until that point. Yeah, and it's fairly easy to do that. The drug names were not coded. Can we consider submitting a project, including drugs to CIHR catalyst grant, and when will the drug info be available? I don't know the answer to when the drug information is available. I know that it's being worked on, but it's very labor intensive. I will get back to that person. I just got a text from a mentor who said that urban and rural is available. Great. So, question. Someone is wondering if the interviews were conducted in English and French only, or were participants offered interpretation, and the answer is English or French only. Can the impending legalization of cannabis, given that, has there been any thought given to integrating more detailed questions on cannabis use into follow-up? So can you repeat that, Mark? Given the impending legalization of cannabis, has there been any discussion of including more detailed questions on cannabis use in future waves of the study? It's not discussed in the past. It's not currently on the table to be added, but it's certainly worth considering in its possibility. How will participant death be captured? Through death certificate matching or some other means? Yes, it will be done using vital statistics, but we often learn of participant death by having family members contact us as well. But it will all be done through linkage with vital statistics. Can data access be expedited in any way for graduate students, especially master's students? No. It's already a reasonably expedited process. It's no longer than applying for any other data set, I would say, and it's certainly a lot faster than collecting your own data. So unfortunately, it's such a process that's required in terms of review that we really only can do it in a regimented fashion like that. Beyond administrative application errors, can an application be rejected based on study design or significance? Policy is to reject as few applications as possible. We always make sure that it's either undergone scientific review or we will do a brief scientific review ourselves if it hasn't undergone scientific review. And we always want to make sure that it stays within what our participants can send it to. That said, it's really difficult to think of a research question that wouldn't fall within the consent process. That would be outside of understanding adult development and aging. So on occasion, we will ask an applicant to resubmit something if we think that it hasn't been fully articulated, but we rarely reject it completely outright. Great, thanks. So we're at 105. There's a couple of questions left over. We'll have to defer the questions about cannabis to another time. If there's a question about REB ethics approval, you'd have to check with your local REB to determine what they require for access to secondary data. So I think that we're over time and I'm getting pressure to put an end to this webinar. So Susan, this was really informative, I think, especially given the upcoming CIHR Catalyst Grant. This webinar has really helped orient people towards what the CLSA can offer and it will be very helpful information with respect to applying for that grant opportunity. The deadline is August 30th for that CIHR Catalyst Grant opportunity. Susan, on behalf of all of us here at CLSA, thank you very much for your very informative presentation today. Great, thank you very much. Thanks, and you can see, for final reminders, there's information on the CIHR funding opportunity at the links that you see pasted there. The presentation slides and webinar recording will be posted to the CLSA website. You've got the links there and we'll be back with the seminar series in September 2016 and we will hopefully be having researchers present the results of their projects that have involved the use of CLSA data. So check our visit for websites and on behalf of everyone at CLSA, thanks for making the webinar series a success and we'll see you in September.