 Good afternoon everyone. Hopefully you can hear me all right. I think we're still expecting a few more people to join in, but I will, given it's 12.30, get started. So my name is Deanna Huggins. I am currently the Director of Strategic Initiatives at Neurological Health Charities Canada. On behalf of NHTC, I would like to thank you for joining us this afternoon. And today we welcome Dr. Christina Wilson to provide an overview of the Canadian Longitudinal Study on Aging. Participating in today's webinar are representatives from various member organizations of NHTC, some of Dr. Wilson's colleagues, and we may also be joined by a representative from the Public Health Agency of Canada. I would like to just thank Dr. Wilson for agreeing to do this presentation for NHTC. And to provide a little introduction to Dr. Wilson. Dr. Christina Wilson completed an undergraduate degree in Mathematics, a master's degree in Mathematical Statistics, and also received a PhD in Epidemiology and Biostatistics from McGill University. She's a professor in the Department of Epidemiology and Biostatistics. Excuse me, she's a professor in the Department of Epidemiology and Biostatistics and Occupational Health. And also in the Department of Medicine at McGill University, where she's also an associate member in the Department of Neurology and Neurosurgery and the Department of Mathematics and Statistics. She's the program director for the NMS National Education and Training Program. And Dr. Wilson is also a fellow of the American College of Epidemiology. And her program of research lies in population-based research in neurodegenerative disorders, including multiple sclerosis, Parkinson's disease, and epilepsy. Dr. Wilson is co-principal investigator on a five-country study of environmental risk factors in multiple sclerosis that was recently completed in Italy, Norway, Serbia, Sweden, and Canada. And Dr. Wilson is also co-principal investigator on the Canadian Long-Toodle Study on Agents. So the CLSA is a 20-year study of 50,000 participants aged 45 to 85, and Dr. Wilson will provide more information about the details of the study and presentation. Dr. Wilson leads the CLSA's Neurological Conditions Initiative as well as the Veterans Health Initiative. The CLSA Neurological Conditions Initiative was one of the projects of the National Population Health Study of Neurological Conditions. And it is this initiative that Dr. Wilson's presentation will primarily focus on today just to provide you some information about sort of the areas of most interest to the NHCC. So I would now like to turn things over to Dr. Wilson. Dr. Wilson, if you'd like to go ahead, I will turn my microphone off now. Okay, well, thank you very much, and welcome everybody. First thing I want to say is I really appreciate the opportunity to be able to give this webinar. I guess the second thing I want to say is I've never given a webinar before. I'm feeling a little lonely sitting here in my office with just my laptop to look at, much more used to being in a room and being able to make eye contact. So hopefully we'll be able to somehow send vibes over the Internet and that can be the substitute for eye contact. What I wanted to talk about today is the Canadian Longitudinal Study on Aging as already described. In fact, what I'm going to do is give a little bit of background about the study, a little bit about what it is that the study is doing, the data that are being collected. I'll talk about the availability of the data for the community wishes to do analysis, and then I'm going to talk again briefly about the future. I'm not actually going to concentrate so much on the components of the project that I worked on, the NHCC project, but perhaps to give you a broader overview so you can see the study as a platform, clearly a platform for neurological diseases but also a platform for other aspects. And yes, of course, there's this little chat box and I think someone's going to be looking at it for me in case any of you have any burning questions throughout, but certainly I'm available at the end. So you'll see on the lead slide there are three co-principal investigators, myself from Indiana and then Master University and Susan Kirkland at Dalhousie. We've been together as a triumvirate since the outset of the planning of this project, which I think serves a lot for our personalities to a certain extent. But certainly the team is much, much larger than this but I'm just giving this on behalf of the three of us. Okay, so I have to click here, right? All right, so as already mentioned, 50,000 participants across Canada. This is a study of aging, not a study of the ages exclusively. So we have gone down in our age range to age 45, picking up the baby boomers to age 85 at baseline following all for 20 years, if we possibly can, and even more if we can get funding, to look at all aspects of aging, and as you've noted, even in the younger age group. So there are more than 160 investigators involved in this in about 26 institutions across Canada. We're looking at very many aspects of aging, biological aging, reliquid genetics. We look at psychological aging, social aging. We're looking at economics, health exchange over time, nutrition, health services, and of course population health. So there's a lot to look at in aging. It's not just a biological phenomenon. So we're trying to capture that in the CLSA, which is why it's so large. The study itself was a strategic initiative of the Canadian Institute of Health Research. It was Ray Joy Baer, who was the first director of the Institute of Aging, whose vision it was to have a longitudinal study of aging in Canada. He put that challenge out to the research community, and Susan Permanter and myself, accompanied by our colleagues, responded to that challenge, and here we are today. So the funding comes, the primary source of funding for the operations of this study are from the Canadian Institutes of Health Research. We also have major funding for Canada Foundation for Innovation, which has allowed us to build standardized infrastructure across the country to be able to conduct the study. And of course, funding from the provinces and universities across Canada as partners in the CFI. And there are other sources of funding, but the major components come from the CIHR and the CFI. So just to talk about the investment to date, so it's $50 million plus to implement the study, to recruit, to design, to develop, to implement, to recruit, and to do baseline assessments and all these participants. The funding that we received from the CIHR was $23.5 million for the first five years of the study, and that's ending actually this year. That, in fact, was only 86% of the funding that was required to conduct the study. So the expectation is that the research team actually identified non-CIHR partners to make up the difference that is needed in order to implement the study. So the CFI money, it's totaled $26.5 million, about $10 million. For those of you who are familiar with the CFI, $26.5 million comes from the CFI, $10 million is matching from the provinces, and $6.5 million comes from the CFI. So just some of the key team members that will photo of us, I'm on the right, Air Parminder is in the middle, and Susan Kirkland is on the left. We have key team members across the country at a number of universities, at University of Victoria, at UBC, at the few Calgary, Manitoba, and at Master, Otto, McGill, Sherbrooke, Dell Housing, Memorial, and Waterloo. Those are just the key members. Those are the people we communicate with at least once a month, but the team is much larger. We have scientific working groups who have helped us in the early stages put the materials together and who are now working very closely with us to make some changes, some tweaks for the follow-up to improve things, to add new material. And we have a website I've just listed that there for anybody who wants a little bit more information. So what's the vision? The vision is that this not only is a study, but it's also a platform that providing also infrastructure to enable state-of-the-art interdisciplinary research and evidence-based decision-making. It's a platform in the sense of the physical infrastructure that we have built, which is available to other researchers to use in our down times, which these days are not very many, but in our down times. It's also a platform in terms of the data that are being and have been collected. So research platform is really at the core of what the CLSA is, although it is, and I think it's important to emphasize this, the study was designed by researchers to answer scientific questions. At the end of the day though, it is a research platform. So what's the aim? We were very clear on the outset that we needed a study that would take into account the dynamic processes of aging in all domains, all axes, and also looking at interrelationships. And again, looking from midlife to end of life. So not starting at the artificial age of 65, which is defined as aging. So these are just some examples. There are many, many to choose from. We are in a situation where we can identify the presence of health conditions. We don't have assessments by clinicians in our study because it's too big, but we do have mechanisms to identify health conditions. And this is of course relevant to the neurological aspects. We also over the longer term will certainly be able to look at risk factors for health conditions and also factors that influence the course of diseases. And we're looking at the aging cardiovascular system, the renal system. We're looking also at diabetes, the musculoskeletal issues, mental health issues, obviously cancer, respiratory vision and hearing, all of those things that we're looking at. And we can look at them either as predictors or as outcomes or as intermediaries. So with the scope of data we're collecting, there's also a huge scope of research that can be done using these data. So here's the busy slide which gives you an overview. And I think if I understand this, I can get a little arrow to do something here. Can I? Am I, can you see an arrow? Anybody see an arrow there? No? Not yet. Dr. Wilson, just a quick question. Are injuries included also in that? Yes. Yes. Yes. For sure. But anyway. Okay. So here's a study overview. So as we said a few times, 50,000 men and women aged 45 to 85 at baseline. We've divided the level of data collection into two levels. We have one level. So on the left of the slide, you'll see we have 20,000 people randomly selected within the 10 provinces, from each of the 10 provinces. And follow that down. You'll see that those are the individuals who are only examined by telephone. They're only assessed by telephone through a telephone administered questionnaire. So clearly that to a certain extent limits the depth of information we can collect on these individuals. But it was important to have a nationally representative sample covering all provinces. If you have a phone, you can be called in any part of any province. So it was important that we have that. So we call these people the tracking cohort. So if you have a piece of paper and a pencil just write that down. Tracking cohort are the telephone. People who have a telephone interview. So that's P for tracking, T for telephone. These individuals just following that left hand column down are followed up every three years with the same length of interview. So about a 60 minute telephone interview. And then in between these two major waves, we make a briefer contact with them which we call the maintaining contact questionnaire. Because obviously we want to limit the number of people we lose that are lost to follow-up, that have moved and we can't find them. And also just to kind of see how things are going. So we have these major waves of data collection every three years and this maintaining contact in the middle. From time to time we will also be linking with the health administrative databases. All participants are asked for their health insurance number. But they do not have to provide it. But if they do, they then give consent for us to go ahead and request linkage, provincially based linkage. So that's the tracking cohort which there's a lot of very interesting information coming from that group. But very little, of course, is going to lead to both physical assessments. So move on to the right-hand side. We have the remaining 30,000 people. Now these 30,000 people are what we call the comprehensive cohort. And think of comprehensive C for coming in, C for comprehensive. So T for tracking telephone, C for they come in, comprehensive. So these people are randomly selected within 25 to 50 kilometers of 11 data collection sites that we've built. It's not feasible to have a completely random sample of individuals across Canada who would then have to come in and have an assessment. The geography just doesn't work. So we identified the sites, built the sites, renovated the sites of their CSI funding, created these data collection sites, and then we went ahead and recruited the participants to come to these sites. Their participation comes in two components. They first have an in-home face-to-face interview with an interviewer. So we send someone out to their home to be interviewed. It's about a 50-70-minute interview. The overlap between that interview and the telephone interview is significant. It's almost 100%. We do a couple of extra things since we're in home, for instance, we ask them to show us their medications, which you obviously can't do on the phone. After they've completed that interview, they then are invited to come to one of these data collection sites. And at the data collection site, they undergo two and a half to three hours of assessment. So we do some clinicals and physical testing. If they agree, they provide a blood sample and a urine sample. And again, just as with the tracking cohort, we do this all over again every three years and follow them up in between with a brief telephone interview. And we also do data linkage. So at the end of the day, we're going to have 50,000 participants at every wave who will have completed an almost identical questionnaire. And 30,000 of them will have had much more in-depth measures. So it's quite a large undertaking, as you can imagine. So it's national and scope. I thought it was important to just let you know how this lays out geographically. The little blue dots are just meant to represent the telephone interviewers. They don't actually represent a number of people, but the fact is that they all are across the country. The red dots represent the data collection sites. And so we have data collection sites, as you'll see, across the country all the way from St. John's to Victoria. There are a couple of provinces where we don't have. I had to learn my geography for this one. So Saskatchewan and New Brunswick, we don't have a data collection site. It was really, when we started it was really because there were not at that time, and we're talking more than a decade ago, researchers who had the ability to pull this together as part of the CFI. So that's what the scope is. Just some more process slides. This is the data collection and this study is paperless. So everything is electronic. We do send letters to the participants. So that's obviously paper. But after that, everything is done electronically. We do have backup paper copies of everything, obviously in case there's an internet problem. But all information is recorded from the participant and automatically sent to the secure server. So hopefully that reduces some of the potential data entry errors. So participants are sent the study information. They are then, well potential participants are sent the study information. They are contacted and asked to consent to participate. Those who consent then provide questionnaire data. And if you look at the right hand of this slide, they either provide it through a telephone interview or they're telephone from one of our four computer-assisted telephone interview sites. Or they provide it through the in-home interview. Those who've done the in-home interview then go to the data collection site visit. They provide the blood and urine. Their data are stored at the statistical analysis center. The biological samples, the urine and the blood samples are stored at the, what we call the BBC, the Biorepository and Bionalysis Center in Hamilton, which was built with the Canada Foundation for Innovation Fund. So we built the infrastructure that is needed for the study. We built the data collection site, the telephone interview site, the statistical analysis center and the Biorepository. So just to tell you what happens at the data collection site, because this is the part that people are sort of interested in knowing what happens to someone who comes. I'll take you through this quickly, just following the arrows. People come in at reception. They sign in and that doesn't mean they actually physically sign, but they come in, they're scanned. They do a contraindications questionnaire so we know what kind of tests we shouldn't be doing on them if there's a contraindication. You know, if they have an ear infection we need to know that maybe we shouldn't be doing the hearing tests on them, for example. They then go into a measurement room where we take a lot of measures, the height, weight, blood pressure. We do spirometry. We do a carotid ultrasound and an ECG. They then move to another room where we do a DEXA, a DEXA scan on them, full body DEXA scan. They then move to room number three where we do vision testing. We actually take a photograph of the funders. We do ocular pressure. We also in that room do grip strength and the first set of neuropsychological testing. They then come out into our hallway, which is also built as a data collection site. They do the timed up and go. They do a four meter walk, a timed four meter walk, and then they do a balance test. They then go into the fourth measurement room where they have their hearing tests. They complete something called a chronic diseases questionnaire. And then they do additional neuropsych testing. They then provide their urine sample. They move into another room for the blood draw. It's not listed here. They check out. We give them a little snack after they've had their blood draw. They get some minimal set of results from the test that they've had. So they get their spirometry results and their vision and hearing, et cetera. And then we give them $30 for their time. So this is about a two and a half to three hour assessment. And all of this, as I said, is electronic. Dr. Wolff, we've got two quick questions here. One is that we have wondering if you might speak to the security of the data that's collected. Okay. Okay. I can do that. So the data that are collected through the computer-assisted telephone interview site again automatically go to a very secure server, data server. And obviously, we keep secretly any of the contact information from the data itself. The data that are sent to the statistical analysis center have already had all of the contact information removed. So they're already anonymized. And we have a very, very secure process for the data because it's absolutely clear that we cannot be having any of this data seen by anybody, anybody identify who our patients, who our participants are. So we have a very strong IT team at the National Coordinating Center in Hamilton who's been charged with responsibility of designing the system for that. So that, for us, security is number one for sure. I don't know if that answers the question. I'm not an IT expert to go into the physical detail of how that is done. But because we don't have any paper, and so we don't have piles of paper being copied and couriered and faxed, we actually are at an advantage when it comes to security. And of course, all our staff signed confidentiality agreements. Thank you. Looks like the question was addressed. And there's just one more question that I'm wondering if you might briefly touch on the difference between the CLSA and the CSHA, which was conducted in the 1990s. Oh, yes. Of course, I can answer that question right away. The Canadian study of health and aging, and I apologize for the two names being very, very similar, was a study of dementia. I was actually a contact principal investigator on that study as well. The study itself was set up with the primary objective of estimating the prevalence of dementia in Canada. The way the study was conducted is it was a cross-sectional study where 10,000 individuals were recruited and the data collected were focused on the identification of dementia of the neuropsychological testing. There was a clinical assessment. So the idea was to come up with the diagnosis of dementia. There were obviously a lot of people who did not have dementia. A second wave of data collection was then planned five years later to follow up the people who were not demented at time one, as well as the people who were. So it was not set out to be a longitudinal study and it was absolutely focused on dementia. So the energy in identifying health conditions was on identifying dementia. So it was a very classical, very important study, very classical disease-based study, which is the CLSA is not that we're much broader than that. So I have several slides here and I'm looking at the time and I'm thinking I won't go through all of this long list of things that are measured. Hopefully you'll have access to these slides so you can take a look. I've mentioned some of these. So of course we take physical and cognitive measures in our comprehensive cohort. This is a list of neuropsychological tests that we're doing, a recent baseline. We have a number of other things that we've included looking at some of the social aspects. Obviously we're interested in how these things may change over time. So social participation, for instance, and satisfaction of life. We have quite an important component of our questionnaires, both for all 50,000, on work-to-retirement transitions, planning for retirement, how many times have you retired, that kind of thing. We also have at the baseline, we had a veteran identifier set of questions. So people self-reported that they were veterans. We included that post-traumatic stress disorder screen as well. Mobility questions, built environments. Lots of questions, lots of health information that remember in the absence of, there are no physician assessments in this study. So in the absence of that, we're collecting health information through self-report but also through some of the measures and then through the data linkage. So we asked a lot about chronic disease and symptoms. Medication is important, of course. Oral health, we're expanding that component in the follow-up. General health injuries is mentioned. Pain and discomfort, functional assessment activities, a day in the living, et cetera. So I do want to get to some other things so I don't want to spend too much time. The classical lifestyle and demographics, obviously smoking, alcohol consumption, physical activity. Those kinds of things are going to be repeated over time. Clearly, ethnicity is not going to be repeated, marital status will be, education, income, transportation, home ownership. So we're asking a lot of our participants. So now let me tell you where we are because I think that that's important to know. This is how we got there, this is where we are. So remember the tracking, cohort, the telephone interviews. So the recruitment and baseline data collection are complete for those 20,000. And the data are now available for release to researchers. So researchers who want to use this, students or researchers who want to use this can now make applications to get access to the data without any of the identifying information. We've also started these short brief interviews that I mentioned that take place in between major waves so far have completed over 13,000 of those. And what the good news for us is that 96% of the people are continuing. So the losses have not been very much at all, which is very good news for us. We're not finished yet. We still have to continue with these maintaining contact interviews. But I think so far we're doing very well. And we're going to begin, for this group, we'll begin the first full follow-up this summer. So it took us two, three years to recruit all these participants. Those data are cleaned, ready for release. And now we're going to start going back to them this summer. For the comprehensive cohort, we started a little bit later because we had to build the site. So it's ongoing. And so far we've recruited about 27,000 of the 30,000. So we're really on track. That means you've got them in for at least the in-home interview, which is the first component. So we're very much on track to finish this later this spring. All of these data have to be cleaned and prepared so we won't be ready to release these data until 2016. We've started the maintaining contact, just mid-way, brief question already, and we're close to 6,000 with that. And that's also doing very well with a higher response rate. And we will be starting the first full follow-up for these folks also this summer. So I mentioned this before, and it's very important to emphasize this, is that the data and the biospecimens are available to the community. And speaking a little bit about the security and confidentiality, you know, we have some fundamental tenants associated with our release of these data and biospecimens. It's clear, and we have a very formal process of the rights, privacy, and the consent of the participants must be protected and respected at all times. So indeed, when we review applications, we assure that what is being applied for the project actually fits in with the consent that the participants gave at baseline because we can't know everything that people will apply for. So our data and sample access committee makes sure that what's being done fits in with what the participants agree to. And of course, the confidentiality and security of the release data and the biospecimens have to be safeguarded. So we have an access process. We have set up a webpage on our CLSA website called Data Preview. The process that we have is quite formal. We try to make it streamlined so that it's not a barrier, but we have an administrative review. Our committee reviews the application, makes a recommendation to the scientific management team. Following approval, there is a formal sharing agreement that is signed by the institution of the user and by McMaster, who are the custodians of the data, verify the ethics approval. And we provide the raw data and or the biospecimens, whichever is the case, to the approved investigator. So this is not a situation where someone is only getting summary data or has to go to a location to access it. The raw data are provided to the researchers. This is just a screenshot of our Data Preview portal, which we try to make very simple by just having three buttons, overview data sets and access. I will talk briefly, because I want there to be time for questions to just let you know what's happening at the follow-up. So we're going to start the follow-up, as I said, the summer for the tracking. So we're going to be re-contacting. It turned out that we had more than 20,000 participants by the time we shut our data set. So we'll be re-contacting all of those for their follow-up telephone interview. We're going to be starting the follow-up of the comprehensive at the same time, re-contacting 30,000 participants to begin the process of starting the in-home interview. And then we're going to be starting, actually, the second maintaining contact questionnaire in 2016. Some new content has been proposed. It's obviously great to repeat the content just in terms of looking at trajectories. But new issues arise, new interests arise, new measures are available. We look back at what we collected and realize there were things that we left out. So these are some items that we're adding for all 50,000 at this point. We're adding a module on child maltreatment, maltreatment of the individual when they were a child. We're adding elder abuse. Epilepsy was already part of the study, but it wasn't part of all 50,000, so we're making it now part of all 50,000. We're adding additional hearing measures, additional measures of arterial stiffness. Obviously, we have to develop, given the nature of the study, the seed questionnaire. So we're looking to how do we contact the proxy? What is it that we ask about the individual who had passed away, who was a participant? We're adding things on workability, subjective cognitive decline. We're ramping up on materials we were collecting on transportation. We're adding preventive health behaviors and some more information on health care use. And so this is all currently in development, so we're going to be fine tuning how we're going to ask these questions, how we're going to take these measures. We have to accommodate for the changing circumstances of the study of aging. So by the, it's very nature, the people are going to get older in the study. So we know they're going to move, so we have to sort out what we're going to do with people moved to try and maintain them in the study. Some people will become institution-like. We do not want to lose people who are not going to be able to come to our site. So we're actually developing a mini data collection site to use in the home. What kind of measures can we have the interviewer use at home to collect that? We may have to make special considerations at our data collection sites for individuals. For instance, if they're in a wheelchair or they're using a walker, et cetera. So we're actually developing a mini data collection site to use in the home. What kind of measures can we have for individuals using a walker, et cetera. There could be increasing sensory challenges. So a particular hearing, because we are contacting these folks first by telephone. So we're working a little bit on how we're going to maximize being able to communicate with someone who has some major hearing impairments. Obviously, cognitive challenges are put at the bottom of the list, but it's obviously not at the bottom of the list. So we're working very hard to perhaps identify who might be at risk of having cognitive deterioration from looking at our neuropsychological testing at baseline. So we're obviously developing protocols for the use of proxies and what kind of assessments we would be able to do on people who have bearing levels of cognitive impairment. So there's lots to change, which I think highlights that there is, this is a dynamic study that is going to have to adapt to the circumstances, not only of the participants, but also the science. We have fortunately been able to obtain some funding from CIHR to actually do some analyses of our baseline biomarkers that we collected, because one of the things I didn't say at the beginning, and I should have, is that the funding provided for the operation of this study does not include any funding for analyses of the data. It's purely for operating the study and collecting the data. So any funding to analyze the data has to come from somewhere else. But we were able to get some funding. Our international oversight committee, like an international scientific advisory board, we recommended that some funding should be put in to do some evaluation of some of the baseline biospecimens we collected that could become part of the CLSA database for researchers. It was considered to be a very good investment. So we're very pleased about that. I just pulled out a couple of things that may be of interest to this group and might actually set aside a question or two, collaborations with other initiatives. Throughout the development of the study, we have spent a lot of time and resources in collaborating with other initiatives, either through things as simple as the PIs, having a face-to-face meeting to discuss common issues, common questionnaires, how things are done, how they share data, et cetera, to more in-depth collaborations. And one example that has come onto the map relatively recently is the Canadian consortium on neurodegeneration and aging. We actually have quite a close collaboration with that group. They are interested in using our infrastructure, particularly our biobank, and obviously they're going to need access to the data because they're looking for a normative comparison for their studies. We're also looking at harmonization of the measures and perhaps adding measures to the CLSA to be in line with what CCNA does. And what we've done, and we did this last year actually, was to form a CLSA CCNA liaison committee so that these collaborations were not ad hoc. It's actually done quite formally. We have a committee made up of researchers and the PIs of both initiatives, and we meet probably once every six weeks to discuss the ongoing issue. CCNA is trying to get in the field. We have things we can share with them. Also, we're putting in a proposal to CIHR shortly to develop a brain imaging sub-study because that's one thing that's missing in the CLSA is imaging. We're not going to propose to do it on all 30,000 people, but we're proposing to do it on a subset of participants. And again, going to CIHR to the normal competitions for funding to be able to try that out. So we have lots of partners and I apologize this list is probably old and we should have more. So certainly a public health agency of Canada through the Neurological Conditions Initiative for sure and also through a collaboration looking at injuries. We had a collaboration at baseline with Veterans Affairs who funded the inclusion of the Veterans Affairs Questions, the Veterans Identifier Questions. We have had a very strong collaboration in the development of the study with Statistics Canada through their methodological input and a source of part of our sample, Ontario Ministry of Health and Long-Term Care, the provinces, universities, et cetera. So I think in the interest of allowing questions and I suspect there are many, I thought I would just stop there and I guess at this point open it up for clarification or questions. Thank you very much, Dr. Wilson. It's Deanna Huckett. I'm just wondering if you before kind of the questions start rolling in, if you might touch a little bit more specifically on the Neurological Initiative and sort of more specifically on what was included and why? Okay. Okay. So the plan for the Neurological Conditions Initiative, and this of course started after the CLS-8 was already in the field, was to take a very close look at what was being collected and to determine what needed to be adapted to be able to realistically identify individuals with Neurological Conditions. And so we just selected a few because we know even with a sample of the size which seems large, there are a lot of conditions that would be woefully underrepresented. So we did that and we really highlighted, we know we're going to be looking at dementia. I mean that's a given. We've already set up neuropsychological testing. We're actually validating an algorithm using those tests. It's currently ongoing, it's not yet finished. And we identified Parkinson's disease as a very important component in this cohort. So what we did is we did have a self-report question for Parkinson's disease and the tracking but that's obviously not enough. So we identified a screening tool based on, probably some of you would be familiar, the Tanner tool that basically asked about symptoms. And we implemented that in the comprehensive cohort but then at the same time, because we're dealing with different timelines, at the same time we actually formally validated the use of that tool within our sample and the way we did that is I had a neurologist who is actually a master student of mine and we recruited from the CLSA, I think it was about 200 CLSA participants who completed the questionnaire and then had a neurological assessment by a neurologist. So if you like the bold standard and we were able to then validate the use of this tool in this group. So even though we implemented it, we had great faith that it would work, we then went on to validate it and the analyses of those data, the complete data are still underway but in fact it is now implemented. This tool is implemented in both the tracking and in the comprehensive for the next wave which I think is really good, much better than the self-report. For epilepsy, we did the same thing. We did have self-reports which again wasn't felt to be adequate. So we identified a screening tool for epilepsy and we validated it again in the CLSA and it is now going to be implemented in both the tracking and the comprehensive. So those were the very tangible things that we did. The other thing that we are currently doing is we have had a request for the data approved, where these data only became available for use in the middle of last year. We submitted an application to access these data. That application has been approved and we are just waiting for the access agreement to be signed and then those data will be analyzed. One of the things we found along the way by just sort of dipping into the data to have a brief look is that in fact there were more than 300 people within the sample who self-identified with multiple sclerosis. I actually wasn't expecting that many. So that suggests to me that we may wish to perhaps look a little deeper at that sub-sample in future studies. So what we've done is we've brought the neurological conditions to the forefront of the study. We have something called the Neurological Conditions Initiative which I lead which is at the moment largely validating tools that we are including in either in the baseline or in the future ways and also analyzing the data with aspects of neurological conditions in mind. I don't know if that answers that. That's great. Thank you, Dr. Wilson. Next question. What are the types of preventive health behaviors that you'll be integrating into the study? So if this question is asking what the questions will be then obviously we're asking about the standard things like pap smears and changes. Have you changed your diet? Have you tried to lose weight? Do you have flu shots? Those kinds of things. That's what I meant by preventive health behaviors. We're just asking questions. We don't intervene in this group so we're just asking questions. Thank you. Are there an opportunity to address other neurological conditions within the CLSA? You've just identified that you may be looking a little bit further into MS and just wondering of the possibility for others. Yeah. Well certainly stroke. I think we have to deal with the numbers. It's 50,000 as I said sounds like a lot but for certain conditions it just won't be enough. So stroke is on the agenda. We do have obviously we have self-report questions. We do do some physical assessments that could be related to cardiovascular risk factors, et cetera. So that's there. I would love to be able to look at ALS. I think that that's just not in the cards. I think for Parkinson's disease we've moved to also look at Parkinsonism. I mean we can do that as well. I am very keen and this is just my own personal interest. I'm very keen to introduce some testing of olfactory function in the CLSA. I'm looking into ways to be able to fund that so that we could have a marker that could be correlated with future outcomes to see whether changes in olfactory function I think we know are sometimes associated with neurodegenerative diseases. So basically a scratch and sniff test. Can we implement such a test in the CLSA? But again, it requires funding to be able to do that. But I'm open to other conditions if anybody's interested to see if we have the numbers to support those kinds of processes. Is that about say a health charity contacting you directly or what type of a process would that entail? Well basically what's happening now is people just generally contact one of the principal investigators and generally what it has to do with neurology people contact me and say, you know the typical thing would be are you looking at this and if my answer is no not yet and the next question is is there any way we could think of looking at it and then we take it from there. Because obviously we want this platform to have the biggest bang for the buck and if we can add new material that are absolutely of interest in terms of learning more about the condition or the risk factors or the prognostic factors then it's seriously considered for inclusion. But everything unfortunately does come with a cost. It's a cost of additional measures for the participants additional time and so that's always a consideration. So we do have to prioritize what goes in. If there is an ambassador or a cheerleader for a particular area certainly within the PIs that usually works a little bit better. So if anybody's interested here please contact me and I'd be happy to discuss what's available in the CLSA and what's possible for the participants. I'm wondering also if you have again recognizing that there's always a cost but if there is a vision or a plan or any proposals in place for bringing the age range further down from 45? Not in the context of this study. We started the cohort in this age range if we brought in another cohort now from a scientific perspective that would have started at a different point in time. So it would be great to bring it down but this study, I don't think this particular study in its current focus is going to come down. It would have to be a companion study that would perhaps take the same measures and start with a younger group. So going to 45 was already something that people weren't doing at the time. Along that same line Dr. Wolfen there's a partnership for tomorrow project which is another sort of national cohort study I believe. I may not have all my details right there but just wondering if there's any linkage or is there a liaison group with the partnership for tomorrow project as well? Well we don't have a liaison group but that was a group that were already in existence when we were in our planning stages and we had some formal meetings. I had a conversation with one of the PIs actually not so long ago who was asking me how do you release your data? Should we do it the same way? We've looked at the measures that they're using relative to the measures that we're using. Their focus is on cancer so their measurements are more related to risk factors for cancer which is quite understandable. Less so for instance on cognition. So we're sort of more general aging but yes we have had many meetings with these groups to see how we can maximize what we can do together, what we can learn from one another but their focus really is on cancer. So how are you working with the Ontario Health Study? I think we're not working directly with them. I think that there's been quite a bit of if I'm not mistaken quite a bit of change in the leadership in the Ontario Health Study. I know that we have had some discussion about possibly sharing a physical data collection site with them. So we're in discussion with them, we know them but there's no formal collaboration as long as as far as I'm concerned that I know that our executive manager is on the call and so she may know from Master Ina. Oh yes, okay. So Ina just sends the answer, correct. We are discussing sharing some of our infrastructure space because we actually currently don't have a site in Toronto so that's been the discussion. Okay, I'm just going to put the final call out for questions here. I'm just waiting to see if anything final comes in. Dr. Wilson, I really want to thank you for your time in putting this presentation together and the opportunity to have the discussions with you. I think there's a lot of interest and excitement about the CLSA and what's sort of coming forward from it. So congratulations on the work you're doing. It's really exciting. Thank you. I do see a question here. What percentage of the cohort has been found to have entered the study with any disorders or diseases? Okay, so we actually haven't done that analysis. You know what percentage of people have any kind of a disease? We haven't looked at that. It's relatively easy to do that if associated with our organizational focus. Yeah, okay. One of the things I can do and even you could do it in our data preview webpage, we actually have a variable search mechanism. So you can go in there and type in the variable that you're interested in. For instance, if you're interested in Parkinson's disease, you can type in Parkinson's and you will then get the data. It will say what percentage of people answered yes to that question. It's probably something I should do since I know what the questions are, but for all of the partner organizations that are part of the NHTC, I could actually go in and see if anybody had self-reported any each of these conditions. And then of course I could see, you know, how many people have reported one, at least one of these conditions. I'd be happy to do that for this group. It's probably easy for some of you to have you do it individually. Okay, so I see another question. Have participants overall been open to having their data links with other data sources? Yes. Well over 95% of participants have agreed to that. That hasn't been done yet. We're working very carefully with the provincial data steward to see how we can do that in each province and then of course nationally in some standardized methods. But yes, they've been very open. That's all part of the consent. We give them information package and yes, they've by and large agreed to that. Is there recognizing the value and utility of the work that you're doing? Is there, do you have any suggestions or ways for the health charity organizations to sort of help support the work that you're doing in terms of advocacy? Are there things that we could do to sort of help support your work? And certainly one of the things that HCC has done has highlighted in our pre-budget submission to the Government of Canada, the work that you're doing and some recommendations for digital funding. But do you have any other suggestions? Well I think in a way I think the onus falls upon the research community to analyze the data and then in collaboration with HCC to come to you and say okay now we have some results. We have some information on the prevalence of this or how it varies from province to province. Now we need your help in getting this information out there. So I think actually I mean I probably shouldn't be saying this on this call but I think the onus is on the researchers to produce some information because I think it's very hard for the health charities to say this is what you need to do without knowing what the numbers are like and I think that was one of the earlier questions. If we can get a better sense of the numbers and if I had total access to the data myself which I don't because I have to make a formal request I would have liked to present some of that material today but I'm sort of encouraged now to push forward with the access that I do have because I think that's what we need to do is to provide and not just the NACC but other health charities perhaps with a bit of a summary for the conditions that they're particularly advocating for of magnitude from our study and what other research could be done. So I think from the terms of advocacy I think you need results first. So we're just about at 130 here so maybe I will just close again by saying thank you Dr. Wilson and perhaps you and I can connect offline I'll provide you a list of the conditions of our member organizations and really appreciate the opportunity to run that initial screen and then we will work to send that information out to our member organizations and also provide them the link to the recording of this webinar which I believe you said will be posted on your website. So really appreciate your time and look forward to connecting further in the future with you.