By Veronica Fratta
Launched in 2013, DS-Connect® is an online health registry for individuals with Down syndrome. The registry supports Down syndrome research by collecting data on medical conditions affecting people with Down syndrome and making that de-identified information available to scientists and the medical community. The registry also connects people with Down syndrome with scientists running clinical trials. It’s a great way to collect personal health data in one place and find referrals to medical professionals in your area.
DS-Connect® is run by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). Along with the NIH, organizations like the LuMind Research Down Syndrome Foundation, the National Down Syndrome Society, and the National Down Syndrome Congress make up the DS Consortium, which supports and disseminates information about DS-Connect®. The current chair of the DS Consortium is LuMind RDS’s Chief Scientific Officer, Dr. Michael Harpold.
Currently, more than 3,220 people from all over the world are registered. Yes, the registry was formed and is managed in the United States, but anyone from around the world is encouraged to participate. The more people register, the more useful information is available to the medical community and the more likely it is for treatments for medical conditions affecting individuals with Down syndrome are to be discovered.
How Does Registering Work?
Registering for DS-Connect® is very easy and only takes about ten minutes of your time to set up an account. Just go to dsconnect.nih.gov and start filling in the required fields. You will first be asked for your name and email address and your relationship to the person with Down syndrome. You will also be asked to pick a username and password. After signing a consent form that explains how the data will be used, you move to the second page.
Next you will be asked for information on the participant: Name, age, gender, city of birth, etc. You can customize your profile to choose who may view your de-identified data (data stripped of all personal information like your name or address) and how you would like to be contacted, if you are open to being contacted. You may elect to share your de-identified data with researchers. You have the option of being alerted of research trials. You can also choose whether to be contacted by the registry coordinator if scientists make useful discoveries for a condition that affects you.
At all stages, your privacy is guarded and your information secure at DS-Connect®. DS-Connect® does not collect your social security number or your address – just your zip code. And by de-identifying data, your personal information is kept confidential, while still allowing researchers to use the important medical data they need to better understand Down syndrome and how to treat it.
If you are still concerned about privacy issues, you can leave many sections blank— DS-Connect® just needs a valid email address and a name (you can even put in an alias!). what is most important is the health information you enter into the registry.
After clicking on the Update button, you can either come back another day to complete the questionnaire or continue on. The initial medical questionnaire at DS-Connect® collects information about the child’s diagnosis, other family members with Down syndrome, congenital heart defects, gastrointestinal conditions, skin and dental issues, skeletal problems, cancer, and many other medical conditions that are common in people with Down syndrome. A green bar at the top of the questionnaire helpfully logs your progress and every time you press the Next button, your data is saved so you can come back to it at a later time if necessary.
There are also questions on the education, reading, and math levels of the person with Down syndrome, as well as some information on the family and then – you’re done!
There are other questionnaires on development, prenatal and birth history, sleep, and the heart that can be filled at any time.
You can also input height and weight measurements and attach reports like echocardiograms or skin biopsies. It’s a great way to keep all your medical information organized and in the same place!
Exploring the Information
By clicking on the tab, “Explore the Data,” you can see the aggregate data of all participants. For example, you can see how prevalent sleep apnea is in people with Down syndrome, and at what age they are most likely to be diagnosed. You might be curious to know what percentage of people with Down syndrome have atlanto-axial instability or you might wonder how many adults with Down syndrome work. All this information and more is available on DS-Connect®.
Knowledge is Power
Without good data, it’s hard for doctors and scientists to help people with Down syndrome obtain the best possible care. That’s why DS-Connect® is such an important tool for the medical community and for all individuals with Down syndrome. Armed with data and facts, parents can make informed decisions about their child’s medical care and help them to thrive and succeed. Also, demonstrating an engaged community interested in research, biopharma companies are more likely to feel inspired to invest in drug therapies and treatments for people with Down syndrome.
DS-Connect® set a very ambitious goal of enrolling 10,000 people in DS-Connect® by 2016. Will you help them reach their goal? Go to dsconnect.nih.gov now to sign up.
Many thanks to Dr. Sujata Bardhan, the scientific program manager and coordinator of DS Connect, who very generously took the time to speak with us about the registry.