The National Institutes of Health (NIH)/ The Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) launched DS-Connect®: The Down Syndrome Registry in 2013 to facilitate information sharing among persons with DS, families, and researchers. It consists of a series of online surveys to collect demographic information as well as health information about people with DS. The Registry has over 4100 participants, and has been supported by the Down Syndrome Consortium, composed of self-advocates, family members, DS organizations and foundations, and the NIH. In 2014, the professional portal was launched to allow investigators to access the de-identified data for research purposes. The registry also enables researchers to use de-identified data to develop studies on the etiology, natural history, and treatments for DS and associated conditions.
The Professional Portal has 3 levels of access. Level 1 access allows approved researchers to view data identical to a participant’s view and perform basic searches of the de-identified data; Level 2 access is for more customized searches, statistical analysis, publication or presentation; Level 3 access is for study recruitment, posting a study announcement, to propose a new survey module, or for commercial purposes. Access for Level 3 requires submission of a summary of protocol, purpose and IRB Status and review by the Research Review Committee (RRC) for approval.
In the past 4 years, over 300 researchers have registered on the Professional Portal for level 1 access. The registry has supported more than 35 studies since 2014. In the past 4 years, DS-Connect has been able to support 7 studies for level 2 access. 28 studies have also been submitted for level 3 access. 25 out of the 28 level 3 studies have been approved by the RRC (89% Success rate). Two of the studies that we had supported right after launching the professional portal has published their results recently in peer-reviewed journal.
Steps for joining DS-Connect ®
It only takes a few steps to join DS-Connect®. The whole process should take less than 20 minutes to complete. If you have Down syndrome (sometimes called being a self advocate), you may want to ask a trusted person to help you finish the steps.
1. Create your account by filling in the needed information: Enter your first name and last name. Then, select the item that best describes how you are related to the person with Down syndrome. Next, enter your email address, and then enter it again to confirm the address. Choose a user name and a password and enter them in the labeled boxes. Enter your password again to confirm it. You will use your user name and password every time you log into the site. Select the box to let us know we can contact you by email, and enter the security code. Once you've entered all the information, select "Register".
2. Selecting "Register" will take you to the online consent form-the page where you will officially agree to take part in DS-Connect®. Review the information on this page completely. Then select "Next".
3. As you move through the next few pages, select the answers that best describe you or apply to you. Select "Next" to move forward.
4. Once you've answered all the questions, select "Continue to DS-Connect®" and then "Next" to go into the site. Once in the site, you'll be able to add background information for the person with Down syndrome, make decisions about the use of your contact information, and answer questions about the health of the person with Down syndrome.
Importance of DS-Connect ®
By Emily Chesnut, mom and advocate
As mom to Nora (age 7) I have become involved in DS-Connect and we participate in research for Down syndrome through Cincinnati Children’s hospital. The Down Syndrome community lags in aggregating our data into a single location so that we can all benefit from seeing health histories and conditions in one location. DS-Connect was created specifically to fill that gap and since it went live in 2013 over 4000 families/ individuals have registered, but we can do so much more. As a family it’s important to know that we have shared Nora’s history in a de-identified location that is useful both to caregivers (like her pediatrician) and researchers who are working to better our community and improve Nora’s future.
Since launch of the professional portal in 2014, DS Connect has supported more than 35 studies, two of which have recently been published in peer-reviewed journals. Researchers can apply to NIH for access to DS-Connect
either the data itself, or to use the network to reach out to families who may be interested in participating in research.
Nora is currently in a study that is looking for the most appropriate cognitive assessments for individuals with Down syndrome, as we have seen how ineffective current standardized testing is for capturing Nora’s true abilities. We participate in research because we want to help be a part of positive change for the future. Nora will tell you she loves going to the doctor, she finds the research fun and engaging. It’s a win-win all around.
You too can do your part by enrolling in DS-Connect, signing up for research (check out the research section of the DSAGC website), and sharing your experiences with other families in your network.