Week 1 ABCD: Introduction to the ABCD Study®

Hi everyone my name is Angie Laird. I’m a professor of physics at Florida International University in Miami Florida and I’m one of the lead organizers for the ABCD ReproNim course together with my colleagues David Kennedy, Satra Ghosh, and JB Poline we’ll be working to provide you instruction on how to conduct reproducible analyses of ABCD study data. This is the first lecture of the ABCD reaper course each lecture throughout the course will begin by identifying its learning objectives. My job in this lecture is to give you some background information about ABCD ReproNim itself and then I will also be describing the objectives of the ABCD study and giving you a bird’s eye view of the overall study design for this ongoing project. Finally as part of this introductory lecture I would like to highlight how the safety and privacy of our ABCD families is always at the forefront of our attention and give examples of ABCD policies and procedures to ensure the protection of participating youth and their families. I want to start by enthusiastically welcoming you to the launch of the ABCD ReproNim course we are very excited to have the opportunity to give this course and we’re grateful for the national institute of drug abuse or NIDA for their support as they have made this course possible.

01:11 - ABCD ReproNim aims to provide training for reproducible analyses of ABCD data and will teach students how to analyze data using the best practices endorsed by ReproNim. So let’s unpack that a little bit and make sure that we’re starting from the very beginning. First what is the ABCD study well it’s the largest long-term study of brain development and child health in the united states. I’ve provided the link to ABCD’s website and we will definitely get into more details about the study itself later on in this presentation second what or who is ReproNim. ReproNim is an NIH-funded center led by Kavid kennedy and it’s designed to help researchers find and share their data comprehensively describe their data and analysis workflow flows in a replicable fashion and manage their computational resource options so that your outcomes are more reproducible.

I’ve also provided the link 02:04 - to neural reproduce website and you can hear more about ReproNim from David in his lecture. Let’s talk a bit more about the course itself and what we want to achieve an increasing body of evidence points to some issues and reproducibility in biomedical life sciences and the fields of neuroimaging and developmental cognitive neuroscience are no exception. Our end goal is that we and the NIH would like to see students in this course conduct reproducible data analyses and for those analyses to be written up, published, and ultimately become part of the rapidly growing scientific literature that makes use of ABCD data. So how can ReproNim help with that? Well ReproNim has developed a curriculum that will give researchers the information tools and practices to perform repeatable and efficient research and a map of where to find the resources for deeper practical training. ReproNim tools and services are intended to support a wide range of users with varied backgrounds from applied users with minimal experience working with computational tools to those with extensive experience in programming and imaging technologies.

Okay so if the goal is collaborative data analyses culminating 03:15 - in publications then why not just host an ABCD hackathon? And this is an excellent question and one that we have thought very carefully about. Most educational programs around neuroimaging rely on intensive teaching over a short period and these typically range anywhere from one day to two weeks however reproducible analytics which is a topic that’s not taught in traditional university curricula requires absorbing a significant amount of diverse technology-oriented content. Hackathons or unconferences are increasingly well attended around neuroimaging and other conferences and these events by their design often self-select individuals who are already knowledgeable in many areas spanning data science and they’re often not suited for training novice students and so if you’ve ever attended a hackathon this means that either a substantial portion of time can be spent leveling the technical playing field or it just means that some people get left out. ABCD ReproNim was created when we asked isn’t there a better way? One that is more inclusive and seeks to provide a stronger foundation for researchers from all backgrounds and levels of expertise. So our solution was to borrow from modern active learning educational approaches.

04:30 - Collectively, we are excited and a little scared to introduce a new form of an inverted classroom for workshops and hackathons rather than simply gather everyone together for a collaborative hack week in which most people come in with already planned project proposals and a set of technical skills to pull them off. We’re going to back up and start the process several months in advance with a detailed educational program. So first ABCD ReproNim will take advantage of inverted or flipped classroom practices. This takes activities traditionally associated with class time and homework and flips them. Prior to class ABCD reprinting students will watch videos online (like this one) and participate in online discussions and then during class time students will participate in open and synchronous discussion of what they have learned in order to facilitate learning and knowledge consolidation.

The goal of this approach is to front load an individual’s learning 05:26 - process so that we can make the most of our limited time together as a community Second we’re going to draw on the use of learning projects as part of what is known as project-based learning in which students show that they have learned each week by completing assigned data exercises during which you will hopefully be collaborating and working with each other. And then finally ABCD ReproNim will culminate in a collaborative hack week. This brings us back to what I said a few slides ago that our end goal is that we want students in this course to conduct reproducible data analyses and for those analyses to be written up and published as part of the literature that makes use of the ABCD data. ABCD Repronim will hold a week-long project week in march 2021 during which students will apply the knowledge and skills they’ve learned towards collaborative and reproducible analyses of ABCD data. By participating in a semester long on course supported by instructors and teaching assistants, students will have the opportunity to benefit from an increased number of hours spent on training through instructor-based and assignment-based pedagogy compared to traditional hack weeks.

06:32 - In this we we expect to provide a better grounding for participants before the week-long project week, which ideally can then be focused on innovating around ABCD data. So this summarizes our overall course design but what specifically do we want you to learn. We’re aiming for six learning outcomes. First from the ABCD perspective we want you to be able to compare different data types and resources in the ABCD data set and demonstrate the ability to access and analyze ABCD data. Then from the ReproNim perspective we want you to be able to describe best practices in reproducible neural imaging and explain why they are important. We also want you to compare different reproductive computational tools and services and demonstrate the ability to access and use open source software.

Finally and in our minds most importantly we expect you to develop 07:23 - and participate in one or more collaborative team-based ABCD data projects so that’s our overall philosophy and why we’ve designed the course the way that we have. Next I want to introduce you to who our team is and who you’ll be working with over the next several months. First as I mentioned earlier I’m Angie Laird and I’m from Florida International University or FIU and I’m one of the ABCD site PIs. I am joined by my fabulous ReproNim colleagues. first up is David Kennedy who leads the ReproNim center and is from umass medical school. Next is Satra Ghosh from MIT and rounding out our group is JB Poline who hails from McGill University in Montreal.

08:04 - Together we are your ABCD ReproNim leadership team we will be providing some of your week content coordinating with the instructors for the rest of your lectures interacting with you during online discussions and working with you during project week. Helping us along the way is Jessica Bartley who is currently a postdoc in my lab relying on her more than 10 years of experience in teaching and facilitating stem courses. Jessica will be able to provide you with additional support and ensure you have access to all of the course materials. As our ABCD reprinting program coordinator Jessica will work with us to make sure that this course is a success. We also have five excellent teaching assistants who will be joining us please meet Liza, James, Dustin, Kristina, and Adam we are really excited about how much they have to offer ABCD ReproNim.

08:54 - Our TAs are helping curate our course materials developing our weekly data exercises and in general general be able to answer your course questions. And then finally since we’re relying on a number of different online platforms Taylor Salo from FIU will be providing an additional layer of technical support so you may also hear from him from time to time. So that’s our team more details about us and our contact information are available on the web page shown at the top of this slide. So let’s talk about the specific timeline of the course so that you’ll have a sense of how you’ll need to be organizing your time. we have structured ABCD ReproNim as a 13 week online course this will include video based lectures that you watch asynchronously like this one as well as additional readings and data exercises based on the lecture content and finally weekly live question and answer sessions.

09:48 - Each week’s lectures will be comprised of a pair of videos one describing some aspect of the ABCD study or ABCD data and the other describing ReproNim tools, resources, or methods. The weekly live question and answer session will be held on Fridays at 1 p.m. us eastern standard time and that’s 11 a.m. pacific standard time for our friends on the pacific coast and will include the pair of ABCD and ReproNim instructors for that week moderated by your ABCD reprinting organizers. So we’ve broken the course into two different sessions session one begins October 16th and ends November 20th 2020 and includes six weeks of lectures note that Friday November 6 we will be including a bonus session immediately after a standard Q & A during which the good folks at the NIMH data archive will be giving us a special presentation followed by time for your questions. A link to our course google calendar is provided on the front page of our website.

10:50 - And again with inclusivity in mind we are striving to implement the overall course to be flexible and adaptable to the circumstances of your individual lives. All session 1 videos were made available by October 9th you’re welcome to watch them all at once or week by week whatever works best for you. Prior to the weekly Q & A we will send around a link to the google doc where we encourage you to post your questions in advance. This will help us make the most of those synchronous sessions and if you’re not able to attend and participate synchronously we’ll be recording those sessions and posting them to the website as soon as possible. We will break at the end of November to the beginning of January we recognize that December is a busy month both from a professional and a personal perspective so no new course meetings or assignments will be given during this time.

Session 2 videos will be made available by 11:45 - January 8th. Session 2 begins January 15th ends February 26 and includes seven weeks of lectures finally. Once the 13-week online course concludes we’ll take a week off and then we will hold our virtual project week from March 8th to the 12th 2021 and we will push out more details about that event as we move into the new year we’ve tried to make this course as open and accessible as we possibly can but the reality is that we have limited resources and we cannot provide a full experience for everyone particularly during project week. Thus some of you applied and will be participating in this course as an enrolled student while others will participate as observer students. An unlimited number of observer students are welcome to view the pre- recorded lectures, participate in online discussions, and access course materials.

12:35 - A hands-on data exercise will be made available each week for everyone to review and reinforce course content while delivering practical skills and reproducible neuroimaging analyses. However, enrolled students will receive additional direct support from ABCD ReproNim teaching assistance and data exercises will be graded to assess achievement of course learning objectives. nrolled students will receive an ABCD reprint certificate of completion at the end of the course that may be listed on their cv or resume. Finally and somewhat most importantly, enrolled students who are able to gain access to ABCD data and there will be more on that later in this presentation will be allowed to participate in project week in march 2021. Given our limited resources we cannot invite observer students to participate in project week.

13:22 - However our goal is that this course delivers you the knowledge and skills you need to conduct your own reproducible analyses of ABCD data. So with all of that said if you are an observer student then you may be watching this video in October 2020 and participating as a course observer at the same time as the enrolled students or you may be watching many months later. While we have tried to reduce the barriers between enrolled and observer students. As you are watching our videos please bear in mind that there are indeed two tracks for this course. So let’s talk about what those barriers are we’d like for everyone to understand the differences between enrolled and observer tracks.

So first let’s talk about what’s available to all students. We will be using several different online platforms to provide everyone with course resources. All students will have access to the website. That’s where we post our weekly lecture videos supplemental readings and data exercises. Video and readings are available for session one now while data exercises will be hosted each week. Session one materials will be made available on january 8 2021. we will use a google calendar to make sure everybody knows the course schedule and that is linked to on the main ABCDReproNim.org website. We will use zoom for our weekly Q & A sessions with instructors enrolled students will receive the direct zoom link while observer students will watch a live stream event that we will share broadly. We will use google docs so that all students can post questions to the instructors of advanced regardless of whether or not you are enrolled observer. And we will use neurostars for online course discussions. Please visit neurostars.org today and create an account.

15:01 - Finally we will use github for version controlled code that we share. And as I mentioned on the last slide enrolled students will have access to some additional resources. First enrolled students are provided access to a canvas online course platform that will allow you to submit your weekly data exercises to be graded. And this is also where you will receive your certificate of completion at the conclusion of the course. In addition we are providing enrolled students access to a slack workspace which will help facilitate organization and communication throughout the course but particularly during project week in March.

and finally we will be holding separate weekly Q & A sessions between 15:39 - enrolled students and ABCD ReproNim TAs to help with the weekly data exercises. Now that I’ve told you about our course I’d like to shift gears a little bit and talk to you about the ABCD study itself. As part of the NIMH or the nNIH program that provides support and funding to ABCD ReproNim. NIH would like for us to encourage students to thoughtfully consider the overall research objectives for the ABCD study when conceiving of their team-based projects. The first goal of the ABCD study is to describe individual developmental trajectories in terms of neural, cognitive, emotional, and academic functioning and influencing factors.

16:19 - The second goal is to develop national standards of healthy brain development third ABCD seeks to investigate the roles and interaction of genes in the environment on development. Fourth to examine how physical activity sleep screen time sports injuries including traumatic brain injuries and other experiences affect brain development. Fifth to determine and replicate the factors that influence the onset course and severity of mental illnesses. Six to characterize the relations between mental health and substance use. And finally the seventh goal of the ABCD study is to specify how use of different substances, for example cannabis, alcohol, tobacco, caffeine affect developmental outcomes and how neural cognitive emotional and environmental factors influence substance use risk involvement and progression.

17:16 - To accomplish these goals the ABCD research consortium consists of three separate entities. First is the ABCD coordinating center or (CC) which is based at the university of California San Diego and is charged with coordinating the scientific and administrative activities of the ABCD study. It provides the overall framework for the management direction and overall coordination of the national multi-site consortium. The ABCD CC is led by Dr. Sandy Brown and Terry Jernigan. Next is the ABCD data analysis informatics and resource center also based at UCSD the DAIRC is charged with the establishment of a harmonized MRI acquisition protocol, the central capture, secure transfer, and storage of many different types of data, the rigorous quality control and quantitative calibration procedures, centralized image processing and information extraction, statistical analysis tool across measures and modalities, and public sharing of data and tools. also so you’re aware the DAIRC was originally established as the data analysis and informatics center or DAIC so you may see that term in certain older publications but it means the same as the current version of the DAIRC.

18:29 - Finally ABCD includes 21 different study sites who are responsible for participant recruitment, enrollment, and baseline data collection during the first two years of the study and now continue to be responsible for the participant retention and data collection of across additional waves of this 10-year longitudinal study. These sites are geographically distributed across four major regions of the continental us including the northeast, midwest, south, and west and are demographically and socioeconomically diverse. the ABCD study is ongoing so let’s take a moment to give some temporal context for where we currently are in the process. The ABCD study was funded in October 2015 and the first year was focused on planning and coordination across the CC, DAIRC, and study sites. The study officially launched and began inviting participants and their families in September 2016.

Over the following two years ABCD engaged in recruitment 19:27 - enrollment and baseline data collection.. At this time participants were 9 to 10 years old. The baseline visit was a long in-person visit indicated by the little building here that lasted six to seven hours and included neuroimaging session along with other multiple types of assessments from both youth and their parents. Enrollment incurred on a rolling basis over those first two years and once enrolled, participants would then participate in follow-up assessments. the follow-up assessments included mid-year phone calls indicated that by this little smartphone at three to six months, an in-person visit one year after baseline without neural imaging followed by mid-year phone calls three to six months after that one year appointment. During this time our participants were 9 to 11 years old excuse me 10 to 11 years old.

20:22 - Enrollment ended in august 2018 with a total of 11 878 participants and at that point study sites fully transitioned from a focus on recruitment of participants to that of retention. Starting in September 2018 we began scheduling year two visits which again were a long six to seven hour in-person visit that included a neural imaging session. Year two data collection was scheduled to be completed in august 2020 with the year four data collection scheduled for September 2020 through august 2022 during that time participants will be 13 to 14 years old and we will again include a neural imaging session. Now I think it’s important to note that in march 2020 like many other research activities all ABCD study in-person data collection was halted due to the covid19 global pandemic. Sites transition to virtual data collection and imaging visits were postponed.

21:19 - As of early October 2020 some sites have resumed data collection while others are waiting for their local community transmission rates to decrease before reopening. And this is important to note since it does have an impact on the timing of data collection for this longitudinal study. Moving forward this two-year cycle will be repeated several times including the long in-person visit followed by mid-year phone calls at three to six months, a shorter in-person visit without neural imaging at the one-year mark, a second round of mid- year phone calls at 18 months this two-year cycle will be repeated until ABCD participants are 19 to 20 years old for a total of six neuro imaging time points. In this way longitudinal data collection will span from pre-adolescent ages of nine to ten years old to emerging adulthood ages of 19 to 20 years old thus capturing that adolescent time period of development. So in terms of the protocols themselves I encourage you to look at the protocol summaries that are provided on the ABCD study website provided here as well as the detailed protocol brochures and the summary of neuroimaging acquisition parameters.

These documents are all really critical in understanding what data have 22:29 - been collected and thus what data are available to you for your analyses. The baseline protocol which if you remember is a long six to seven hour in-person visit includes both a youth and a parent protocol. The youth protocol includes measures of physical and mental health, substance use, neurocognition, culture and environment, brain imaging, and biospecimens. The parent baseline protocol includes physical and mental health ,substance use, and culture and environment. Other sources of data from the baseline protocol include geocoding from residential history, school records, and a teacher-based assessment the brief problem monitor.

23:14 - And I’ll note now that if you look at the syllabus for the ABCD reproductive course you’ll see that we’ve organized many weeks worth of content specifically around these different types of assessments. As one of our course outcomes is you being familiar with ABCD data we think it’s critically important that we spend quite a bit of time reviewing the different assessments as these data will be available to you for analyses during project week. The one year protocol includes youth assessments of physical and mental, health substance use, neurocognition, culture and environment, and biospecimens no neural imaging. While parents provided data on physical and mental health, substance use, and culture and environment the two-year protocol is similar to the baseline protocol in that it included a neuroimaging visit as well as other assessment types such as physical and mental health, substance use, neurocognition, culture and environment, and biospecimens but if you look closely you’ll see that the number of assessments per category has increased the kids are two years older at this point than when we last saw them or at least when we last saw them for the neuro imaging visit and there are new questions that are more appropriate for 11 and 12 year olds compared to 9 and 10 year olds and so this was reflected in the protocol. As youth age the ABCD protocols will be modified at each stage to capture capture newly relevant information for the age period being measured.

And this is perhaps especially true for the more detailed substance use assessments that 24:45 - will begin to be included as youth potentially begin experimenting with sips of alcohol towards escalating alcohol use and potentially engaging in underage binge drinking episodes. I’ll also note that additional sources of data may become available at different time points. For example when transitioning from baseline to year 2 protocols we added a fitbit protocol to include mobile measures of sleep, health, and physical activity. For the next few slides i’ll be talking about the protection of human subjects in research the ABCD study involves children under the age of 18. and this was justified by the focus of the study on neurodevelopment and behavioral maturation in childhood and through adolescence.

The age range of the children enrolled in the 25:31 - study at baseline were 9 to 10 years of age and this corresponds to a period during which ongoing neurocognitive maturation is significant while high-risk behaviors psychiatric symptoms and substance involvement are frequent. And so this design allows the investigators to examine the degree to which these adverse outcomes are most strongly associated with negative influences in the environment or with pre-existing phenotypes. The enrollment demography of ABCD was designed with consideration of the demographic composition of the sites and of the us of the whole based on guidance from the university of michigan institute for social research who examined the population of 9 to 10 year olds within catchment areas of ABCD data collection sites. And it’s important to note that no gender or racial or ethnic groups were excluded. I realize this is a very text heavy portion of the presentation but these are important details that I want to make sure that we cover in this first lecture so that you’re familiar with the ABCD study. Next up is informed consent.

Interested youth or parents contacted the research 26:38 - site in response to the school mailing like mail or email or phone or websites or the family was contacted by study staff using contact information provided by schools through twin registries or from mailing lists. Either by phone or in person ABCD study staff described the project in more detail and asked if the family remained interested. And then the parent and or legal guardian was asked a series of screening questions to determine if the child was eligible. More details are provided in ABCD reprint in week 3 regarding study eligibility criteria. If the youth remained eligible the family was scheduled for an appointment the parent guardian permission for child.

adult being the parent or legal guardian or primary 27:27 - caregiver adult informed consent and youth asset forms were referred by the family at the first in-person assessment session. Importantly during this informed permission and consent process the parent or legal guardian or primary caregiver was told that they would not be informed about the child substance use and that youth self-report and lab data are confidential with the exception of any acute safety issues such as suicidality or a medical emergency. The assent and consent forms included baseline and 10 years of follow-up participation therefore in informed ascent and consent was obtained in study entry. In addition youth participants will be asked to re-assent at age 13 with a more comprehensive adolescent ascent form then again at age 18 when the parent or legal guardian permission is no longer needed and then the youth will be asked to consent to all protocol elements for their own participation. School records, the parent or legal guardian was asked to sign an optional release of records to the school district attended by the youth in order to obtain school records starting at the grade level of youth at study entry through the completion of high school or receiving the ged or the highest grade achieved.

The records requested include attendance, classes taken, grades, 28:53 - grade point average class rank and standardized test scores. The PI at each study site complies with the family educational rights and privacy act also known as FERPA of 1974 to the end that the rights and privacy of the enrolled students and their parents are not violated or invaded. We also have a release to obtain a questionnaire from a child’s teacher. Parents were asked to sign this release to ask their child’s teacher to fill out the brief problem monitor teacher form and send to the study site. The parent provided the teacher’s name and permission to send the questionnaire if the teacher was willing they spent about eight to ten minutes answering questions about the youth and then this form was sent to the study team but not shared with the parent.

29:35 - Finally lexisnexis was used to gather residential history. Lexisnexis is a publicly available search tool that provides the ability to look at residential address history for an individual including ABCD study participants. This information can be useful when attempting to contact hard of reach families to promote retention and prevent attrition but it can also be used for geocoding to allow for research questions that focus on issues related to family neighborhoods. Before doing these searches ABCD investigators requested verbal permission to gather this information from participating youth and their families. In terms of potential risks, there are no serious risks involved with a study.

The assessments involved in the protocol entail no 30:20 - foreseeable risk besides perhaps fatigue mild to moderate demands on attention and cognition and possibly feeling uncomfortable or anxious with the nature of some of the questions such as premarital staging or problems with behavior however these are not seen as significant risks. One potential risk is the breach of confidentiality related to collection of sensitive information. Confidentialities issues are significant since this study collects a variety of sensitive data. In particular with respect to the risk of inadvertent disclosure of illicit substance use genetic mental and physical health information. Since personal information is gathered there exists the risk of possible invasion of privacy.

These risks and also 31:02 - the protective measures put in place to manage these risks are outlined in the consent documents. Data from the study including genomic information likely to be generated in future analyses will be available in controlled access data repositories for data sharing. The fact that the data were to be shared was noted in the consent forms and we will talk more about this data sharing in the next slide since this is a very important aspect for us here at ABCD ReproNim. Additional procedures were put in place to protect against inadvertent disclosure, coercion risks associated with mri, and functional mri in the blood draw and these have all been detailed in the central irb protocol managed by uc san diego. There are procedures for ensuring professional intervention if a participant should become uncomfortable with any of the procedures they can stop them or withdraw from the study at any time.

If a medical problem arises 9-1-1 31:58 - will be contacted immediately. If psychological distress suicidal ideation or any other problem should occur the state license pi of the study or a designated backup license professional such as an md or a phd level clinical psychiatrist or psychologist will be contacted immediately there are procedures for intoxication if you use breathalyzer, alcohol or saliva drug test has positive that is suggesting intoxication the youth will not be studied that day. The parent will not be informed of the positive results unless the intoxication is life-threatening. And then finally there are procedures for incidental findings on neuroimaging. Participants in their family are informed that this is a research study and not a clinical study and therefore does not include diagnostic imaging.

However all scans are fully de-identified and 32:49 - reviewed by a neuroradiologist. The site PI and the person on the site research team designated to review incidental findings will be notified in a timely fashion of significant findings via email and the confirmation that the email was received and followed up on will be confirmed by the ABCD coordinating center. If the finding has potential of clinical significance the parent or legal guardian or primary caregiver will be notified and advised to follow up with a physician. So now let’s shift gears again and talk about access to ABCD study data. ABCD data are made available to qualified researchers via the NIMH data archive which is sometimes called NDA and some kind sometimes called NDA depending on an individual’s preference so be ready for that and the infrastructure was established initially to support the national database for autism research (NDAR) but has grown into an informatics platform that facilitates data sharing across all of mental health and other research communities.

33:52 - Authorized users are also able to use the ABCD data exploration and analysis portal which is referred to as DEAP. The DEAP allows users to analyze ABCD study data online while providing appropriate statistical models and tools to take advantage of the study design. NDA users submitting data access requests for broad use and controlled access permission groups must be sponsored by an NIH recognized institution with federal-wide assurance and have a research-related need to access NDA data and the users submitting data access requests for controlled access permission groups must adhere to the consent- based data use limitations. This means that your institution must have an active federal-wide assurance or FWA to be granted access to ABCD data any researcher with fwa can request access to ABCD data including both enrolled and observer students in this course. To access ABCD data in the DEAP researchers must create an NDA account complete an automated data use certification or DUC as we call it with approval of an authorized signatory official of their affiliated NIH recognized institution and submit this DUC to end up for review and approval by the ABCD data access committee.

35:20 - So for many individuals this can be a time intensive process that can take several months and it can be particularly challenging for students who are unfamiliar with their institutions processes and policies for obtaining signed approval on research related agreements. If you are uncertain as to who serves as your institution signing official we recommend that you reach out to your supervisor or research mentor for this information and ask for further guidance. As further help the NDA website does include a series of excellent tutorials designed to explain these processes and we have provided a google doc associated with this course with answers to some of your frequently asked questions. To find this document please go to the main ABCD ReproNim web page provided here and click on data access instructions in the center of the page so we’ve received multiple questions about this process already so we’re going to back up a bit now and clarify a few of your questions. First you do not need to be based in the u.

s or have affiliation with a us-based institution to 36:28 - have an FWA. Many international universities do have FWAs however if a member of your lab has ABCD data access it does not mean that your institution has an FWA. This lab member might have a secondary affiliation with an institution that does have an FWA and perhaps you do not share this secondary affiliation. We recommend that you check with the institutions that you have affiliation with to see if they have an FWA and we provide the website on this slide to to check those FWA numbers. Unfortunately if your affiliated institution does not have FWA you cannot submit a request for this yourself.

An FWA is an agreement between your university’s research leadership 37:16 - and the us national institutes of health. If your university has an FWA or if you are affiliated with another university that has an FWA then you will need to submit a data access request to obtain a data use certification (DUC) in order to access ABCD data. If your university does not have an FWA and you are not affiliated with any other university or institution within FWA then unfortunately you will not be able to access ABCD data. If you are not able to gain access to the ABCD data for this course please do not attempt to borrow someone else’s access in order to use the data. Data access is granted on an individual basis not as a lab-wide basis but you will still be able to participate in the ABCD ReproNim course.

Data exercises will focus 38:09 - on working with ABCD data but they will also be translated to be used with non-ABCD data such for example one that everyone might have access to such as the human connectome project data. And so again if you are an enrolled student but do not have access to ABCD data then unfortunately you will not be able to participate in project week. Please read your data use certification or DUC especially where it defines the terms and conditions for access to ABCD data. By signing and submitting a DUC to NDA you and your institution agree to the following: that you will use data for research only that you will not identify participants, that you will keep this data secure, that you will only work with users who also have an approved DUC, that you will not distribute the data to non-authorized users. This means that you cannot share data with other students in this course and that we will be limiting project week access only to those students who have a signed DUC in place.

39:13 - That you will delete data after use and that you will submit your results to an NDA study. This is a feature of NDA that allows you to associate your publication with the underlying data and the end up. You are required to do this if you analyze ABCD data and publish it. Users cannot make individual level ABCD data available that have not been publicly shared on NDA. This prohibition includes the original data as well as data derived from the original data. and if you have questions about that we recommend that you check out NDA’s website. There are penalties for violating these terms of use. And remember this is a contract between you your research institution and the national institute of health the agreement is valid for one year which means that if you want to access ABCD data for more than one year you will have to submit a renewal DUC following the same procedures we’ve just reviewed. And that covers it for this first ABCD ReproNim lecture. If you have registered for the course either as an enrolled or an observer student then we have already sent you an informational email and if you didn’t receive this email from us then it may have been filtered out by a spam filter so please email us at info ABCD-ReproNim.

org 40:28 - also if you’re watching this video but you haven’t registered for the class we ask that you please register as an observer student this helps us make sure that you have access to all of the course materials but it also helps us keep track of the number of people engaging with the course materials so that our efforts will be continue to be funded by the NIH. and with that said we would like to thank the national institute of drug abuse for their support the ABCD reprinting course is supported by an r25 award and thanks to you for watching this video we look forward to working with you and hope that you find this course helpful thanks .