NIH to launch Down syndrome research portal
- Reams of de-identified personal data of individuals with Down syndrome (DS) will provide researchers and other healthcare and science professionals to gain insight and further DS-related research.
- Access to research and healthcare professionals is free, though they must sign up for an account. People with DS provide their personal health data on a voluntary basis and may withdraw it at any time.
- Broad goals of the system, known as the Down Syndrome Registry (a subsite of DS-Connect), include planing clinical studies, recruiting clinical trial participants and generating new research ideas using information gathered from research participants.
The Down Syndrome Registry is being launched by the NIH to advance Down syndrome research and provide a link between the community of individuals with DS from around the world, with researchers and the healthcare community. From a treatment perspective, one goal is to help healthcare practitioners gain insight into the medical problems faced by individuals with DS, including autism spectrum disorders, hormonal and glandular problems, hearing loss, vision problems and heart abnormalities.
The DS Registry is a sub-site of DC Connect, which was launched in 2013.