 and Dr. Yves Jeunette. Dr. Jeunette will be providing some introductions to today's webinar, so let me introduce him first. Dr. Jeunette is professor of cognitive neurosciences and aging for the Faculty of Medicine at the University of Montreal. He is currently the scientific director of the Institute of Aging of the Canadian Institute of Health Research, C I H R, where he is the scientific co-lead of the Canadian longitudinal study on aging, as well as the dementia research strategy. He also acts as a co-lead of other C I H R initiatives on e-health innovation, healthy and productive work, and transition and care. He sits on many international advisory and management boards, including three European collaborative initiatives in which Canada participates. He's a member and former chair of the World Dementia Council. Dr. Jeunette was a scholar and scientist of the Canadian Medical Research Council and received many distinctions, including the Andre Dupont Award and the Yves Cassara Award for Outstanding Professional Achievement. Thank you very much, Dr. Jeunette, for being here, and I would like to welcome you to offer some introduction words for the seminar. Thank you so much, and thanks for the introduction and good morning, good afternoon, whatever your time zone. To this CLSA webinar series, I'm very happy to be here with all of you and Dr. Parminder Reina. I just want to express the satisfaction of the Canadian Institute of Health Research with the evolution of the CLSA platform. As you probably know, the CLSA is one of the most important investments of the CHR over its history since 2001, and CLSA is capturing a lot of resources of the CHR which were provided because of the aging of the population and because the need to understand the determinants of the healthy aging in the spirit of the WHO functional healthy aging. So I would like, on behalf of Dr. Stephen Hoffman, who's the scientific director of the Institute of Population and Public Health, and myself, the Institute of Aging, would like to welcome you. We consider CLSA as a unique platform for all Canadian researchers, and as it is the case in many countries, and particularly the European Nordic countries, such a platform has a special role for early investigators as well as trainees since it offers access to data in a very easy way, and these data have been thought through by numerous researchers and numerous peer reviews so that this is really something important. CLSA is like good wine. It becomes better and better with age because as we move forward, we're entering the second and probably the third dot or the third follow-up or the second follow-up, so the third point on the line, and as we all know, we're starting to have a curve when we have three points on the graph. So we're really eager to see this third point coming in the series of points that CLSA will offer, and I think that CLSA was really preparing the right set of data because since the age of entry in the study was either between 50 and 80 or 55 and 85, given the immense growth of the population of the oldest older and the centenarians, I really look forward for the first participants in CLSA to move to the status of centenarians. So on the CIHR side, we will pursue our support for data analysis grants as the new data will become available and this involves many other institutes. So on behalf of CIHR, thanks for all the leaders of CLSA and all the participants, and I'm very happy to be here today with Parminder Reina. Thank you very much, Dr. Jeanette. That's really good words of context and thank you for being here. Let me now introduce our speaker, Dr. Parminder Reina. He is a professor in the Department of Health Research Methods, Evidence and Impact here at McMaster University and the scientist director of the McMaster Institute for Research on Aging. He holds a Canada Research Chair on Geoscience and the Raymond and Margaret LaVarge Chair in Research and Knowledge Applications for Optical Aging. He's a member of the National Senior Council and is the lead principal investigator of the Canadian Launch Center Study on Aging. I will hand over control of the presentation to him and invite him to begin our webinar. Thanks, Carol. Thanks very much for those kind remarks and thank you, Dr. Jeanette, for your introductory remarks. It's good to have you here. And give everybody the context within which COSA has developed over the last many years and continues to further develop as it ages. So my goal here is that, and also, first of all, before I get into the presentation, I also want to thank, looks like there are 137 participants for this webinar. Thank you all of you for coming and listening and showing interest in the CLSA. It's one thing to create a platform, but in my opinion and many others in the leadership position of the CLSA, like Susan and Tina Wilson, the success of the CLSA is from its use of the data and the scientific outputs that we create that change the way we practice medicine for public policy. So my goal is to bring you, give you an update as to where we are with the CLSA, and so you have a sense of when you're applying to access these data, what is coming, what we already have, and what you should anticipate in the coming years in relation to the CLSA. But before I get into that, I am going to give you a bit of a background and context within which CLSA was developed. Okay, how come I'm not moving forward here? Do that in the bottom, underneath the screen, the little teeny arrow. Okay. I also wanted to thank Christina Holston and Susan Kirkland, who are the core PIs of the CLSA and play a very important role in every aspect of the CLSA along with multiple other investigators who are part of this enterprise. And in fact, it's important to recognize that the CLSA would not have happened without the generous contribution of Susan and Tina and in addition to our other investigators who lead the local sites in relation to collecting data. So thank you, Susan and Tina and other members of the team. I'm not sure why I'm not able to move it here. That's okay. And so let me give you a bit of overview. CLSA, what is the CLSA research platform? Then I'm going to talk a little bit about data availability and then talk about data access. Just to remind everyone that CLSA, even though initially it was developed, which one has to do as a research project which had specific objectives and research questions around which this study was developed, but it was soon conceived to be a research platform that means that it is a data infrastructure that we have created that is available to all researchers in this country and internationally. And the idea is that this particular research platform, it was designed to enable state-of-the-art interdisciplinary research evidence-based decision-making that comes out of the data that results this platform might produce as many of you access these data and come up with some interesting results. And at the end of the day, it's really important to remember that there are 50,000 participants who are contributing immense amounts of time in providing us with the data that makes this research possible and actually builds many people's careers in this country that at the end of the day, we are doing this to improve the health and quality of life for Canadians, especially older Canadians and their families. So we can't forget that this whole enterprise is successful because 50,000-plus people are volunteering their time and with immense amount of generosity, they are allowing this type of science to move forward. It's also important for us to recognize that CLSA is a network of collaborating institutions. We have institutions from coast to coast and without their participation, none of this would be possible. And in order to carry out this type of collect data and manage data and disseminate data, you need some good infrastructure to be able to do this kind of research. As many of you probably know, we collect some data through telephone interviews. So we have four telephone interview centers across the country that cover different, French and English language as well as different time zones. This is a huge country. So we have four centers, one in the University of Sherbrooke, the one in Manitoba, SFU, and Dalhousie University. And this was all built with the resources that we've received from Canadian Canada Foundation for Innovation. In addition to this, you also need a lot of other enabling units to carry out research of this nature, creating a platform of this nature. We have a coordinating center that manages the whole collection and day-to-day operations of the CLSA here in Hamilton. We collect biological samples. Archiving those samples and storing them and maintaining them in a very high quality space becomes important. So we have a BBC, which is the biorepository and bioanalysis center here at McMaster as well. We have Epigenetic Center, which is involved in doing some epigenetic analysis at UBC. And many of you who are applying and accessing data for research probably have contact with our statistical analysis center that's led by, directed by Dr. Christina Wilson. And this is located at McGill University in Montreal. And that's where all the data gets cleaned, prepared, and disseminated to the research community. Just additional information because we have done a lot of work. I thought we might share it with you. We have one of the largest biobanks in the country that CLSA has built, 31 nitrogen freezers, which we have the capability of storing almost five million aliquots. And we also have a research laboratory which is dedicated to do more esoteric biomarker analyses that are not available in other locations across the country. And I'll talk to you about that a little later. So just to remind everyone what CLSA is, it was conceived to be a research platform of 50,000 women and men between the ages of 45 and 85 at baseline. And this 50,000 actually had two arms to it in a way. One was the 20,000, which is what we call a tracking cohort. And these 20,000 were random sample of our Canadian population within the 10 provinces. And the data that we collect from these 20,000 people are collected through our four CADE centers that I mentioned before using telephone interviews. And the other part, which is what we call a comprehensive component of the CLSA that targets around 30,000 people. Actually, we ended up recruiting 30,000, little more than 30,000. These are also randomly selected, but these people are randomly selected within the 25 to 50 kilometer of 11 sites across the country because this involved much more in-depth data collection and the people had to travel to a certain place to be able to provide data. So we wanted to make sure that it was feasible for the participants to be able to come to your data collection site and be able to go through all sorts of a comprehensive assessment. In this part of the CLSA platform, we go to the homes of the people, we collect data in their home, then we set up a time where they come to our data collection site. They're almost for an average of two and a half hours where they do a whole lot of physical assessments along with biological sample collection. At the bottom of this slide, after the people 51,000 plus people were recruited, we finished the baseline and we finished our follow-up one in 2008, 18, and now we have started our second follow-up which will continue for the next three years and that will be completed in 2020. It's important to remind everyone in addition to this primary data collection we are doing, we also collect participants health guard numbers with their written consent and that we will have some ability in the future to do data linkage with healthcare databases across the province and we are working on that as part of the CLSA plan. How do we mobilize a national data linkage strategy here? It's important to remember that there were three different sampling frames that were used for the CLSA. We partnered with Statistics Canada for the tracking cohort and we had used the Canadian Community Health Survey 4.2 cycle on healthy aging and some of these individuals have shared to, agreed to share the results with us, contact information with the CLSA and we ended up recruiting these individuals to the CLSA and this is an important part of the CLSA linkage because we were able to use the same strategy for sampling as Statistics Canada has done plus we were able to calibrate our sampling weights back to the Canadian Community Health Survey that guided the whole sampling strategy for the CLSA. We also partnered with many of the provincial ministries of health where we could access contact information directly or indirectly so that was the other one which we used as a sampling frame and where the first two were not sufficient we also supplemented with a random digit dialing to do a pre-recruitment now people who indicated they would be interested in the CLSA and then we went on to recontact them for recruitment into the study and collect data. It's also important to remember when you are using the CLSA data that exclusion criteria for the CLSA includes that there are people who are in the three territories are not part of the CLSA similar to what Statistics Canada does persons living on federal First Nations reserves, full-time members of the Canadian Armed Forces, individuals living in institutions in other words that the CLSA is a community-based sample people who are in the long-term care facilities that did not participate in the recruitment of the CLSA and people who are unable to respond in French and English were not included in the CLSA. Primarily, we wanted people to be able to complete interviews in English or French in two official languages. And as we were asking people to do a lot especially consenting for all sorts of things and we wanted to make sure that the people were cognitively intact to be able to give a consent. And so from that point of view, at baseline the CLSA sample might be, it is cognitively healthier than sort of the general population. This is what gives you a sense of where the CLSA is. The blue dots that you see on the screen are basically the 20,000, the tracking cohort sample and the big circles where the names are attached are over 11 and data collection sites that are spread from coast to coast. As I go through the presentation, I just wanted to remind that I will continue to use this terminology just to remind you again, tracking cohort is 20,000 that is provides data through telephone interviews and comprehensive cohort is 30,000 plus individuals who provide data by us visiting into their home or them coming to, and them coming to the data collection site. I also want to remind everyone the way the CLSA sampling was done, there are common sampling methodologies that you can actually on common measures create the cohort of 50,000 combined and that represents the, that is generalizable in almost every sense to the Canadian population. And so there's nothing wrong with people using data to analyze data with all 50,000 where we have exactly the same measures available in these two cohorts. I will spend a little bit more time on the measurement side of the CLSA but I wanted to give you a baseline when we started what the depth and breadth of the CLSA is. If you look on the left side upper quadrant where it says physical and cognitive measures, these are the types of measurements that we are doing that is mostly done in the comprehensive part of the cohort. This is where people come to the data collection site where they go through all sorts of detailed physical assessments such as actually measuring their height and weight, blood pressure, doing performance testing, doing the vision testing, including retinal images, tonometry and visual acuity, hearing, using an audiometer, spirometry for the lung function, body composition and bone density using DEXA measurements, ECGs, carotid ultrasounds, and we have a detailed battery of cognitive assessment in the 30,000 and obviously as I mentioned before, we also, with the consent of the individuals, collect their blood and urine samples as well. And then the information that is under the health information, psychosocial and lifestyle, many of these measures are present in both the tracking and the comprehensive and it also gives you a sense that CLSA has immensely rich data in social aspects of aging, psychological aspects of aging, wealth and assets, lifestyle and social demographic, health and physical assessment. So it's a fairly balanced dimensions that CLSA captures for not only for asking some creative interdisciplinary questions, but also engaging people from multiple disciplines to analyze the aging processes from a different perspective. Now I'm going to shift gears and tell you from a data availability point of view what we have already available and what will be coming down the line. And just to give you a sense from the baseline questionnaire, we have all these social demographic variables available. And as some of you already have experienced with applying for data to the CLSA and have gone to our data access application either on Magnolia, which I'll talk about a little later, you will see many of these variables listed on our data checklist. So this is not going to be unfamiliar, but some of you who have not gone and checked it, this is what you will see. So we have a fair bit of data on social demographic variables. I won't spend time listing each one of this for you, but it is on the screen, lifestyle and behavior. And these are some of the things that are available both in the tracking and comprehensive. So let's say if you are interested in this aspect of the CLSA, you can analyze the whole 51,000 plus people in the CLSA. Here again, these are other measures that are available. They're the same measures in tracking and comprehensive, general health, women's health, vision, hearing. This is self-reported in many ways. Oral health, ADL-IDL function, and many of the self-reported chronic conditions that are listed here. So these are both available in tracking and comprehensive and already you can apply to access these data from the CLSA. In addition to social demographic and health type of data that previous two slides described, for both cohorts we have available psychological health components, looking at depression, general mental health, satisfaction with life, PTSD, and a short cognitive battery. That is common between the two, tracking and the comprehensive. And then labor force type of variables and other social health aspects of aging that are also available for both the training for tracking and the comprehensive part of the CLSA. And when we just focus on the questionnaire side, the baseline questionnaire that are only available in comprehensive, but not in the tracking, the short diet questionnaire, we have a nutritional risk, which is available both in tracking and comprehensive, but the short food frequency type of a questionnaire we have that is only available in comprehensive. In addition to self-reported chronic diseases in the comprehensive, we also collect detailed information about many diseases in relation to chronic disease symptoms because using chronic disease symptoms, data plus the self-reported, plus the biomarker, plus the medication data that we are collecting as part of the comprehensive, we are able to actually develop disease algorithms that allows us to say somebody who definitely has a disease, probably has a disease or no disease. We also collect data on sleep, life-space assessments, psychological distress and personality traits just in the comprehensive. And there are a few components in the tracking only that are only available in tracking, not in the comprehensive side, self-reported height, self-reported weight, and functional status. If you recall, I mentioned in the comprehensive, we collect data on performance tests such as grip strength, standing balance, time up and go. Equivalent to that in the tracking cohort is a questionnaire-based functional status. However, it is important to remember it's very difficult to do a crosstalk between the self-reported functional status measure and the actual performance testing. In addition to the measures that I've already described in comprehensive, as I mentioned, we collect blood and urine and we extract DNA. In addition to the three cognitive assessments I mentioned that is common to both tracking and comprehensive, these are the additional cognitive batteries that we use in the comprehensive. We have a Miami perspective memory test, Strupe Victoria version. We have a controlled oral word association test in the choice reaction time. And these are the things I already mentioned before I won't repeat them in any detail here, but these are the physical assessments that link to height and weight, hip-waste, circumference, blood pressure, region, hearings, barometry, and time up and go, standing balance, four meter wall, chair, eye, grip strength, tannometry, retinal scan specifically, we can look at diabetic retinography, AMD, and retinal vascular. It's important to again remind all of us these images are available, but they haven't been quantified yet to assess a diabetic retinopathy, AMD, or retinal vascular because that requires us expertise and technology that was not available when we started measuring these scans. So scans are available, and if somebody's interested, they will have to analyze and quantify these three measures within the retinal scan. As part of the DEXA, which is not listed here, we also have images from which you can quantify aortic calcification as well. And again, one will have to access images to be able to assess the aortic calcification as part of the DEXA images. As part of the comprehensive, in addition to, as I said, we have blood, urine, and DNA collected. We have done some biomarker analysis that is either available or coming available in the next year. Obviously, we have hematology available on all baseline participants who gave us the consent to give blood and urine sample. 25,000 people did hematology. This was done in real time with a fresh sample at each one of the data collection sites because we have a cultural counter at each one of our data collection sites. Then biochemistry was done on 27,000 people, and we picked this standard lab, which is in Calgary, with the Calgary Laboratory Services. This is a clinical platform, and we picked biomarkers that represent different physiological systems in the body, and it ranges from albumin to liver and enzymes, such as ALT, c-reactive protein, triton and cholesterol, ferritin, 3T4, hemoglobin A1C, HDL, LDL, non-HDL, the thyroid-stimulating hormone, triglycerides, and vitamin D measurement, and also calculated EGFR, which is a glomural filtration rate for kidney function. In addition to that, right now we have available almost for 9,800 people, the GWAS, Gene-Wide Association Analysis, we did, and the next set of 10,000 will be available in mid to fall time period of 2019. So this year, collectively, we'll have almost 20,000 GWAS completed within the CLSA. Hopefully by early 2020, we will have completed all 30,000. Again, in 2009, we will have epigenetic analysis done on roughly little less than 1,500 individuals. This is again the GWAS. It is the Epigenetic-Wide Association Analysis and this is a DNA methylation, and that should be available later part of this year as well. We just recently developed an agreement with a company called Metabolon to do a Metabolonics analysis. This is a collaboration between CLSA, Metabolon, and Canadian frailty network, where we'll be doing 10,000 Metabolomics using LC-MS-MS systems. This is a technology that allows us to look at about 1,300 different metabolites per person, and the goal is to have this available towards the end of 2019. In addition to the primary data that we have collected and released so far, we also work with another C I H R funded large initiative called CNU, which is trying to create an environmental indicator database for Canada for research purposes. And we have linked at the different levels of aggregation, whether it be a FSA, census subdivision, municipality, depending on what the level of aggregation or a postal code, on various types of contextual data, such as social and material deprivation indices, cannial data, which looks at, I think, mobility type of indicators, weather and climate, air quality, air pollution, air quality, night time light, and level of greenness across areas where CLSA is present. So that was, up to that point in time, was what is already available from the CLSA baseline. And probably many of you have applied to access these data and data are getting richer and richer every day and becoming more interesting. And I think these data will become even more interesting as the longitudinal data become available. I think you're not mentioned that the data starts to get really interesting once we will have the follow up to data coming. But nonetheless, sometime this summer we will have follow up some aspects of the follow up one data available. And in addition to what we were collecting as part of the CLSA baseline data, there are some new measures that are going to be part of the follow up data. And this particular slide highlights some of those. For example, we collected data on childhood maltreatment and health across the lifespan, tried to see childhood distress and child abuse type of measures. We also collected data on elder abuse. We added a loneliness scale, unmet healthcare needs, some issues around preventive health behaviors. We had added in addition to our geometry that we did in baseline, hearing handicap inventory for the elderly. We added gender identity questions, subjective cognitive decline and meta memory. We also added an epilepsy screen as part of the follow up one and work limitation. And we started to collect data on people who had died and sort of doing some decedent interviews. Something that is not mentioned here which will also be available sometime this year as part of the data is that we had also started to do linkage or some through linkage and some through other processes data about the mortality. So we will have around collectively, I think around 12 to 1500 people who have died from baseline to follow up one in the CLSA and we have identified those people and those data will be not the cause of death that is not available. Only thing that will be available is whether they have died yes and no and date of death to some extent. And some of the, just to remind in addition to the new variable that we mentioned were added into the CLSA, many of these are going to be able to give you the continuity from baseline to follow up and much of the CLSA did not change from baseline to follow up because we wanted to continue to keep the longitudinal trajectory that we had set out to capture as we go forward. So there is a lot of commonality between the data collection from the baseline to the follow up but there are some new measures that were added and some were taken out. And from a data access point of view as you know the data access applications for the follow up one data is now open. We had our first intake of the follow up one data application in February competition and there will be two more this year. And the way the data are going to be released to you is that each one of these files will come to you separately baseline and follow up and with a code that allows you to do that linkage that's what the bottom part of this slide is getting at. So that is what we have available that is what is coming available from the follow up data. So I will take some time to explain to you or provide information to all of you about the steps that you need to use to access these data. As we mentioned, I mentioned in the Eve Jeanette also mentioned that CLSA is designed as a research study but funded as a research platform. So it's important to remember that all research is going to apply to access these data. And we really encourage trainees to take advantage of these data for their dissertation work. And there are three timelines or deadlines in a year and this is completely out of necessity. We would like to have more but we don't have the capacity to be able to take in more application because it takes a lot of time and energy to manage these applications and find data sharing agreements and disseminate data. So we have landed at a compromise here where we have three deadlines, February 25th, which is gone now. Next one is June 5th and then the third one is September 25th. It's important to remember we are giving CLSA data to researchers to analyze in their own research groups on their own computers. But with that ability to have data available to you on your computers comes with a certain level of our responsibility of protecting the rights and privacy and consent of our participants because this study would not exist unless we satisfy the needs of our participants to then protect their privacy and confidentiality. Many of you probably think we are fairly rigid in relation to how we release data, what our expectations are. But from that point of view, we have developed a trust. Our retention rates are tremendously high in mid-90s and that is happening because our team is doing fantastic work but also the trust we have developed with our participants. So protecting their confidentiality and protecting that data and biological samples is critical to the success of the CLSA. And this is an important lens to keep in mind when you apply to access these data. You are getting a incredible resource in front of you to analyze but it comes with a tremendous amount of responsibility and we want to make sure those responsibilities are fulfilled to its fullest form. Now we have come up with a new system for researchers and trainees to apply for data access. We developed a new web-based data access application system called Magnolia. You don't have to do any paper filling of the form anymore. You can fill in your application, you can track your application and that's where you can sort of have all the information that you need in relation to preparing your application for data access. But before you apply, you have access to Magnolia. You have to send an email to access at clsa.elcv.ca and give us two to three working days to receive a login information. So please don't leave filling out the Magnolia application on the day of the deadline because it does take our staff a few days to get back to you with a login information. Many of you asked these questions to me. What is the timeline before we get the data? As I mentioned, by the time you submit your data access application to a deadline, the deadline access application closes. Right after that, we do an administrative review and a statistical review to make sure there's nothing missing and we have the data that you're asking for and after that administrative and statistical review is done, then we hold a meeting with our data access committee and the scientific management team reviews the recommendations of the data access committee and that process generally takes six to nine weeks depending on availability of the people who are part of the data access committee. I would say our biggest time lag is once the application is approved and the researcher is contacted and developing the data sharing agreement and many times it is the negotiation between McMaster and the institution that is receiving the data that takes time and from your point of view, if you can facilitate and speed up the data sharing agreement through your research offices and your legal offices, the faster the process will go. But this is the step that takes the longest time. Once that is done and we have the evidence that you have received the ethical approval, that information is sent to our statistical analysis center and within five to seven days, data set is prepared and released to you for analysis and on average, it is a wise thing to say that if either you're a student who is doing a dissertation work to apply almost six to seven months prior to unique data because that's the time what we have seen takes to get the applications reviewed, agreements signed and disseminated to the researchers for analysis purposes. And as part of this data access sharing agreement and giving you the data, it is important to remember that you do read agreement carefully because there are some requirements in the agreement that you have to fulfill. One is that you have to provide us with a final report of the project. That gives us a sense of what happened with the data, analysis happened, one came out of it. And secondly, if you're doing a publication preparing for a publication, that publication has to go through our publication committee. And we do not do a detailed scientific review of those papers, but we want to make sure some of the facts related to the CLSA are accurate and write acknowledgements in relation to our funders and other acknowledgements are done properly. There is a data access fee for the Alphanumeric data for Canadian researchers. The fee is $3,000. And for international researchers, the fee is $5,000. And graduate students using data solely for their thesis purposes get data for free. And postdoctoral fellows using data solely for their postdoctoral work, whatever they're doing, they get also a fee waiver, but that is only allowed once. So they get one free data access application as part of their PDF. It's important to remember that trainees must be enrolled at a Canadian institution or be supported by Canadian funds if working outside of Canada. In addition to this Alphanumeric data, there are requests that are coming our way that requires a fair bit of work on our part to release that data, which are images and other complex data. That is sort of the background data that some researchers might want to recalibrate some of the data that we have produced. So re-analyze with a new technology. In that case, there is additional cost of $1,000 to access these complex data. We try to keep it simpler that on average, this is what we will end up spending. Some might cost less and some might cost more. This is the Makeup Power Data and Sample Access Committee. Joan Lindsay from University of Ottawa and formerly from Health Canada is the chair of this committee. Vice chair is Mark Ramis. He's a faculty member at University of Waterloo and other members represent many different disciplines for many institutions across Canada. It's important to know that none of these people are investigators of the CLSA per se. So this is an independent committee that is supported by ex-officio, one of the PIs of the CLSA. In this case, it's Susan Kirkland and our data access officer, is the one known as SAZAC. Short name for this ish. And then it's also observed by a CHR personnel. In this case, it's Oliver Jacob-Gravill. And you can see we represent many disciplines from this committee to statistician, to basic scientists, to geneticists, to social scientists, to ethicists and psychologists. And so it truly reflects the way the CLSA is organized from a measurement point of view and we want to make sure that our data access committee reflects that makeup as well. So far we have nearly approved around 200 applications since 2014 really. Our major data release didn't happen until 2016. And you can see third of the applications are related to our trainings in this, what we have approved. And I've been just handed that I have five minutes left. And these are some of the examples of selected approved projects. I won't read all of them, but it gives you a flavor that we have projects that represent social aspects of aging, immigration and aging, frailty, genome-wide association study of osteoporosis, environmental and also looking at more physical assessment. So it gives you a flavor of range of projects that are being done. It is mostly national researchers who have applied, but we have also given you an example of one project that is in progress, led by Claudia Langenberg from Cambridge University in UK. This is the keywords that we have assembled for all the applications there that have come. The size of the word indicates that's where the most number of applications we have received. But you can see it represents many, many different areas. It's not just one area that people are interested, people are exploring all sorts of different areas within the CLSA data. And I'm sure as more data become available, other areas will start to become bigger and bigger in the context of the keywords. We also have several resources for you on the website. Unfortunately, I'm not gonna have a whole lot of time here to show you what that is, but if you go to our CLSA website and on CLSA website menu, you will see menu button called researcher and data access. And if you press that button, you will be taken to a data access section where you will see a data view preview portal, application process, application documents, policies and guidelines, and data and biospecimen availability. And I have a screenshot here that show you what that looks like. We also have something called data preview portal. I know recently it was down, but I think it's going to be online again shortly. And it gives you some sort of access to some summary statistics. You can explore data by various scales by scale and area of information that is available in the CLSA. It allows you to think about what kind of sample sizes you're going to be able to get if you're thinking of pursuing a particular research question. We also have on our website frequently asked question. Again, I'm not gonna spend time, but if you have some questions before you send us those comments, please go to FAQ and see if those questions have been addressed there for you. And most of these questions are related to data access, application process, publication and presentation about the data preview and the data set. And any additional questions you have that are not on FAQ and you want to know, please send your email to our, this email, which is access at clsa-elcb.ca. Future data releases are, which are going to be coming, as I mentioned, epigenetics, metabolic and medication data that is being coded right now. Upcoming follow-up is going to be releasing some of the remaining physical assessment data, hematology data, cognition data, and then follow-up data is in this space, positive mental health, anxiety disorder, additional measure of hearing, sitting height measurements, weight perception, resiliency, intimate partner of violence. And we are reintroducing from baseline, we have the PTSD, and in follow-up to, we are bringing it back to look at the PTSD issues in our population from a longitudinal perspective. These are photos, picture of some of our research team who either are leading our working groups or are the leads of the data collection sites or enabling units across the country. And these are some of the names of our key investigators who do a lot of work to support CLSA. And I really want to acknowledge their work in creating this very rich research platform. I think I will stop here and these are some of our contact information. Please feel free to send us any email to our CMSA. Thank you, I'll stop here. Thank you very much, Dr. Rainer. That was really a wonderful overview of our platform. So I believe we also have Dr. Jeanette still available and we'll, okay. So we'll work through the questions, but remember that we have a good group here to ask the questions too. So first question, from Martin Tammy Maggi, will cost-specific death data become available in the future? Sorry, I can hear the question. Cost-specific death data? Well, our goal is that it is a bit more complicated because we will either, we work through statistics Canada or go through province by province. And right now the challenge is that some of the provinces won't allow that data to leave that province. So our goal is to have that cost-specific data available, how that will get disseminated, how we will organize as part of the national data dataset. That's what we are trying to negotiate. Ideal place would be the statistics Canada, but the statistics Canada mortality file is little behind in the time. I think the most up-to-date version is 2013 or not something new has happened, but that would be the place we will go. But right now the question is the linkage and creating a one national file that is the limiting factor. Otherwise linkage is not that difficult to do. Not a question, but a comment here from Dr. Esha Shendari, as a member of the Master Aging Portal Citizen Advisory Council, I congratulate the school for this innovative social platform as well. Thank you very much. A question from Dr. Mark Arm. Yeah, what can you do? Which is... You're stuck, so there it is. I am stuck. Sorry, we're having a little technical difficulty with questions here. Well, let me ask you a quick question before I get back to that. So the CLC is primarily based on this talk, a research platform for academic students to conduct aging research, but maybe you can take a little bit of time and talk about the other people that would be interested in our data or the different groups that would access CLC information or the stakeholders that would be important. Sorry, I was reading the question from Mark on the screen as you were talking about. Let me ask the answer. Sure, let me read it real quick. We will take postal code data for participants. The ability to conduct spatial temporal analysis of the FSA level is quite limited. It will be... Ideally, we will all like to have the six-digit postal code data available, but it is considered a identifiable information according to our REBs and ethics approval bodies. We cannot release six-digit postal code because it is considered a identifiable information, and any identifiable information is not allowed to be disseminated. Alexis Mentell asked about the linkage beyond canoe. What are the linkage opportunities are there currently? We are exploring linkage options with provincial healthcare databases. We have to keep in mind that the funding that we have from CIHR, that funding is to collect the primary data in the context of the CLSA. We do not have any funding to actually do the data linkage with the provincial databases. So what we are doing right now is to work with different provinces to figure out, first of all, how can we create a data linkage that researchers, when they apply to access these data, they get a national-linked dataset with hospitalization, drug, physician-building data, home care, whatever those data might be. And I think that's the challenge in the context of the CLSA in Canada, is that there is really no mechanism available for data to leave British Columbia and come to some sort of a national repository where researchers can do, let's say, national analysis on all 50,000 people. Having said that, recently, CIHR has funded a Spore Data application. And the goal of this Spore initiative is to facilitate data linkage across the country and allow access to these data in a much more efficient and coordinated fashion with cohorts like CLSA. CLSA is one of the case studies in that. And we are beginning a bit of a pilot project on this data linkage and how we do the harmonization across different provinces because not every province has the same level of data. We are starting with Ontario and then we will move to each province to create common data elements. And so those are the opportunities that we are looking at and we are at the mercy of the provinces in many ways. But dialogue is ongoing. We have had a lot of conversations. There's a lot of positive attitudes about it, but proof is in the pudding when that happens. If that doesn't happen, then the default is that each researcher applies for data linkage to their province and then we come up with ways to do that linkage with the CLSA data. In my opinion, that is not the most ideal because CLSA was designed to be a national cohort. And if we start doing it by jurisdiction, it actually weakens the argument of 50,000 people. And so that's my thinking and that's where we are. Hopefully I answered a short question in a long, convoluted fashion. And I think maybe you answered a couple of the other questions that have popped up as well, so. Sharon Bossabora asked, please comment on which additional stakeholders, e.g. policy makers have potentially CLSA data. So that's kind of my question initially. So we work very closely with many of the federal agencies. We have worked with Public Health Agency of Canada, Health Canada, their environmental branch. They helped us create the environmental data as well as before canoe came along. Economic Social Development Canada last year, we produced a report from the baseline data, which was commissioned by the public policy folks. And then we get all sorts of other requests for data use from at the level of the city. Calgary City had approached us. I know there's an age-friendly cities project that's going on that has reached out to the CLSA to use these data. So it depends on the stakeholder in this situation. Some stakeholders are much more sophisticated in the data use. Others require support in the use of the data. Some require some results, some require access to data. So these are some of the examples and Ministry of Transport in Ontario. We work with them to collect some data on transportation module and they are very interested in those data as they become available for their policy making as well. So we are getting late past one o'clock. So I'll ask one more question from our question sessions and then do a conclusion, but we'll try to answer the questions after that as well. So last question here from Paul Nick. What will the genetic data look like? Will it be preprocessed by the CLSA or law? I'm not sure what you mean by preprocessed. We, the GWAS data is available as a GWAS data, it's the whole thing. And, but it is cleaned up, it's quality control, quality established. This is the data that is available to be used. In the future, as some of the analyses get done and people start to develop polygenic risk scores depending on what chronic conditions people are looking at, that will start to populate the CLSA database around those polygenic risk scores as well. So if you mean that it is absolutely raw data, no it's not, it is cleaned up, quality assurance is done, it's ready to be used, but do we have polygenic risk scores as specific SNPs pulled out for researchers to use? No, somebody have to be familiar with the GWAS data to be able to use these data. Thank you. So Dr. Jeanette, do you wanna have the final word here before we wrap up? And thank you very much for your time, for being here as well. No, I think this is a fantastic opportunity for not only supporting needed research, but also to transform research results into better ways to support our aging per population in Canada and elsewhere. So I think there's a lot of opportunities here and I'm sure that everyone will want to see it. Thank you so much to Dr. Parminder and all his team. Thank you, Parminder. I'd like to remind everyone that CLSA data access requests application.rungoing and the next deadline for applications is on June 5th. Please visit our website under data access to review available data for their information and details about the application process. I'd also like to remind everyone to complete the survey located under the polling option. If you have any questions or concerns we can help you with, please write it into the chat box and we will help out. Remember the CLSA promotes this webinar series using the hashtag CLS webinar and we invite you to follow us on Twitter. Finally, we have our next monthly webinar in May on combined vision and hearing loss in the CLSA, prevalence, severity and relationships to cognitive and social variables. When we will welcome our next speaker, Dr. Walter Widdich, an assistant professor in the School of Optometry at the University of Montreal. So please go to our CLSA website to register for our webinar series soon to join us for the rest of our 2019 webinars. So we will go ahead and finish up answering the questions that are here and available if you have more questions and feel free to write them in and we will write back. More mortality questions. So the data limited to all cause mortality, I believe you answered that mostly but there's several questions about the mortality linkage data if you wanna review that part again. Well, I mentioned already it is either you go province by province and the challenge becomes how do you bring that data out of each province? We are hoping that Statistics Canada will update their mortality file so essentially one can do a linkage with them but at this point in time, what we have done which will be a good way to look at this data is that we know the people who have died within the context of the CLSA. We have collected through our decedent interviews as much information we can collect directly from their relatives or friends who provided care to the person for the cause of death and what their life was like in the last three months I think of their life. And so we do collect a lot of other decedent information about people who have died in the context of the CLSA. And but what we don't have at this point is the actual cause of death that might be available through the mortality file that is coming from the death certificate. And again, we have to remember that the cause of death in many of these death certificates is not the holy grail here. There are a lot of inaccuracies and further work will need to be done to come up with some sort of a cause of death within the context of the CLSA based on mortality data plus the decedent question as we do. Certainly an interesting focus for the future. So we will work on answering these specific questions in the comment box and remember this webinar will be posted in the future. So thank you very much everyone and thank you again.