 Okay. We're moving on now to a presentation on Phoenix, which is the phenotypes and exposure toolkit. And we're going to get a, I guess this is kind of an update, right? Aaron, or a progress report. Yeah, exactly, Rudy. Yeah, okay. Share my screen. So Aaron Ramos, the deputy director of the division of genomic medicine is going to give this presentation to you. Thanks, Rudy. Thank you, everyone. So the Phoenix toolkit team has accomplished quite a bit these past few years and we're really glad to have the opportunity to share some of this recent work with you. I'd like to acknowledge my NHGRI colleagues, Joti Dial and Madison Goldrich for their contributions to the program and this presentation. So let's, to begin, let's rewind. I'm going to take you back to 2006. So around this time, NHGRI was standing up some of our first consortia of genome-wide association studies. On the left, I've included one of the early Manhattan plots from a Type 2 diabetes study to remind us what the genotyping arrays were like at the time. Fair to say we've come a long way since then. With this study design, we knew that we were going to have, in order to have a chance to detect loci contributing moderately to common disease, let alone picking up gene-gene or gene environment interactions, we would need large sample sizes. And our hope going into this, these programs, were that we'd be able to combine many of these studies to generate these large sample sizes. It became quickly apparent that the lack of the common phenotypic and environmental exposure data that was collected across these different studies really was a rate limiting step. And that years were being spent on data harmonization efforts before you could really dig into the analyses. So we recognized at that time that the potential for combining data or doing these analyses would be greatly increased if researchers began including common data collection protocols in their studies. And that really led us to the Phoenix toolkit. So for those of you that aren't familiar, this really is an online catalog of recommended measurement protocols for the research community. Again, the high 30,000 foot view is that we really want to facilitate cross-study analysis, increasing the impact of individual studies that are funded at the NIH. Speaking of funding, this was stood up by NHGRI, but over the years we've brought on a number of NIH institutes and centers as partners. There's now seven other institutes that contribute co-funding to this effort, which is really terrific. The PI is Carol Hamilton from RTI International. So just to give you a sense of content, currently in the Phoenix toolkit there's over 860 data collection protocols from 28 different research domains. So just a few examples of the domains cover things like demographics and risk factors like substance use and physical activity. There are domains that span life stages including reproductive health, pregnancy, pediatric development, geriatrics, and then there's domains that focus on a particular disease area like diabetes or oral health. And then through those partnerships and co-funding from our NIH institute and center colleagues, there's a number of specialty collections that do a deeper dive into some particular content, for example, mental health or blood sciences or social determinants of health. So just a bit on the overall process for Phoenix, really building consensus and getting the research community behind the protocols that are included is quite important. Phoenix is guided by a steering committee. Actually, Jonathan Haynes has been a longstanding steering committee member who is actually the first chair of the steering committee if I'm thinking about it in the early days. We identified at least one liaison from each of the NIH institutes and centers to participate and provide advice, help us target particular areas. Once Phoenix and the steering committee decided to focus on a particular domain like genomic medicine implementation, there would be an expert working group assembled. They really did the lion's share of the work in identifying the appropriate protocols to include in the toolkit. Outreach is quite important. There's an effort to get feedback from the relevant research community. And there are also expert review panels. So every couple of years, they review the Phoenix content and make sure it's still up to date and relevant. So the criteria for a protocol being included in the toolkit is listed on the slide. Just to be clear, this isn't, we're not asking the working group to create a new instrument like a new tool kit. We're asking the research community to do the research review, administer questionnaire. The idea is to really pick out the protocols that are already being used by the research community that are broadly applicable. That have low burden both to the participant and the researcher that have good data on validity and reproducibility and our open source. So just to give you a sense of what it's like to navigate the toolkit. I can search participants. I can search the toolkit for nicotine dependence. And you can see a number of protocols are returned. The Fagerström test for nicotine dependence is right at the top. You can do filtering by data collection mode. If you're looking for bioassays or an interview or administered questionnaire, for example, also by life stage and a few other different filters. So if I click on that first Fagerström test for nicotine dependence, you get lots of information about the particular protocol, how it should be administered. You can see the exact questions in this case. There are six questions in this particular Fagerström index. And then there's also metadata. So there's the variable ID, basically the data element dictionaries. This is important both to the researcher, but also provides the opportunity to link the Phoenix toolkit with a number of other resources. So Phoenix is featured in the NIH common data element resource. There are a number of standards from different vocabularies and programs, including links that are integrated into Phoenix. So each variable has a link code. There's been a lot of work to integrate Phoenix into dvgap, which I'll tell you about in a moment. And also redcap. So those of you that don't know is a secure web application for building and managing online surveys. So this is a platform that's used by the NIH funded CTSAs or clinical and translational science awards. And there's over 170 redcap institutes that are using the Phoenix protocols, including 70 that are outside of the United States, which is exciting. And then Phoenix is represented in a number of different ontologies. So a little bit more about that dvgap collaboration. So the idea was to essentially map the Phoenix variables to the variables in all of the studies in dvgap. This has been a long-standing collaboration. And to date, there's been over 13,000 links that have been generated between a dvgap variable and one of the variables in a Phoenix protocol. The idea really is to facilitate identifying which studies use the same, ask the same question in the same way. So you can get these links both at dvgap and also through Phoenix, there's a search tool and there's a link to the variable page. So just to give you a sense, if I search Phoenix toolkit for, I wanted to specifically know which studies collected information on alcohol 30-day frequency, you'd get returned the six or seven studies in dvgap, including links directly to apply for those dvgap studies. So now I want to transition to some of the new content that's in the toolkit. So the genomic medicine implementation domain is a recent addition to the toolkit. This particular group is co-chaired by Wendy Chung and Kyle Brothers. And they were given the scope of identifying the protocols that address the following, understanding of baseline genetic information and their implications, impact of genomic interventions on patients, families and providers, and assessment of organizational characteristics and readiness to adopt genetic services. So what I'm showing you on the right side of this slide is just a screenshot of seven of the 15 protocols that were added to the Phoenix toolkit just a couple months ago. Some of these particular instruments came from NHGRI-funded studies, including CSER and Emerge, which was really nice to see. Another fantastic collaboration that we've had and will continue to have with the National Institute on Minority Health and Health Disparities is adding additional content around the area of social determinants of health. So with their co-funding, there was a number of protocols added to the toolkit focusing both at the individual level and at the higher structural level to capture various elements of social determinants of health. So I give you a few examples on the screen. And there's really been a lot of interest and uptake in these particular measures in the Phoenix toolkit. I'm just giving you one example here. This is for the COVID-related RADX UP initiative, which aims to understand factors that have led to this proportionate burden of COVID-19 on underserved and vulnerable populations and the funding opportunities for this program strongly encourage the research community to use these particular social determinants of health measures in the Phoenix toolkit. And then speaking of COVID, the last set of new content I wanted to introduce was the Phoenix COVID-19 Research Collection. And this work was supported by funding from a number of NIH institutes and centers, led by Bill Riley's group at the Office of Behavioral and Social Sciences Research. And this is a two-part project. The first part was really just to survey the research community when COVID research started. As many of you know, there's just a rapid proliferation of new protocols, questionnaires to capture information from the research community. And so first we work with our colleagues at OBSSR and NIHS to catalog as many of these as we could. And then the second phase was really leveraging the crowd, a crowd-sourcing effort to prioritize which are the protocols the community felt were of highest relevance for continued COVID-19 research. So you can see there's a number of collections. There cover a variety of topics that are listed on the screen. And again, I think there's over 14 or 15 funding opportunities announcement specific for COVID that strongly encourage the use of these particular protocols. So I think I just, this is my last slide, just a quick comment on toolkit use and statistics. I think you've heard me mention the support from our NIH Institute and center colleagues, cumulatively now there's almost 400 funding opportunity announcements across the NIH that reference Phoenix. There's 1.6 million page visits and nearly 7,000 investigators have taken measures from the toolkit, downloaded them and incorporated them into their studies. The toolkit team tracks a number of different highly used features. So I'm just showing you the top 10 used protocols in the Phoenix toolkit from the past couple of months. And many of these I think would be as you expected a lot of demographic variables for sure. So that's my last slide. I really want to take a moment to acknowledge the entire RTI international team. Again, led by Carol Hamilton and her co-investigator Tabitha Hendershot. I have the steering committee membership listed on the screen, co-chaired by Mary Marazita and Catherine McCarty. So I'm going to take a moment to acknowledge that we have provided support for Phoenix these past few years. There's a link to take you to the website and see all of the hundreds of other colleagues at this point that have provided their expertise and guidance along the way. So I will stop sharing and I did want to give both Jonathan and Wendy an opportunity to comment on Phoenix since they've had a chance to help shape some of the data. Sure. First thing to say is that Erin has been a wonderful shepherd for this project over its fairly long history at this point. And it's been a really interesting project. And as she pointed out, it started off really with a somewhat narrow focus of, you know, GWAS studies and trying to just coordinate some of the data. You know, the way the data was analyzed and if anyone's tried to work with any data collected by any more than one group, you know how difficult it can be to harmonize all of that. So this is a tremendous resource for providing, validated for the most part, validated for the most part relatively easy to use protocols for collecting that data. And even if you've got existing data to harmonize that data to standard so that it can be used across the you know, by lots and lots of different people. The other thing that I would just point out is that not only the number of domains and protocols and measures that have been done, but also the processes that have been used have evolved a lot. So we're now using crowdsourcing to try to help identify what are important things to put in there. And a lot of the domains and measures that are there get updated, get reviewed and if necessary, get updated. So it's really been a nice a very nice resource and I've actually enjoyed very much working with Aaron and working with Carol and the entire Phoenix team over the years. Thanks, Jonathan. Wendy. I just want to second with Jonathan it said about Aaron. It really I have to say in terms of groups that I've worked with and similar things. This was relatively painless and I think that was mostly due to Carol and Aaron and the RTI staff. Our group was really thinking about measures that could be used in terms of genomic medicine and implementation and hopefully we'll be coming out in genetic medicine in the future. I think it's a great way to highlight this to many non genomicist and being able to put sort of best practices and we also appreciate it as we were doing that we're missing some measures in the field and so I hope this is the type of thing where the toolkit continues to fill over time. I don't think our job is done yet. But again, I think it hopefully is something that makes it less painful for everyone else who's in the work getting those measures out and I really just have to can't overstate the support and the guidance from the Phoenix steering committee all these years it's been really helpful. So I'm happy to take any other questions if you have any. Sharon. Aaron, has there been more thought and maybe institutes do it and I just don't remember including encouraging the use of Phoenix modules like in RFAs and program applications because I still think there are a lot of NIH funded investigators that aren't aware and start writing a survey to submit with a grant where there's already, you know, recommended modules available. Sharon, that's a great question. I think I went by that slide too quickly. It was on the statistics page at the top. There's almost 400 funding opportunity announcements that we mentioned strongly encourage the use of Phoenix. Some institutes have gone so far especially with the specialty collections of having a core set of measures that if you receive funding from that particular institute they really want you to use those core measures and if you can't use them it's okay you have to provide justification as to why not and it's also not meant to limit the other types of instruments that really just to get the community to focus on at least having a few core set of variables in common. Thanks, Sharon. Other questions or comments for Erin. Alright, Erin, thank you very much. Thank you, Rudy. We'll move along now.