Down Syndrome Connect Registry

ABSTRACT. The Down syndrome (DS)-Connect® registry is an important resource that enables collaboration between the NIH, individuals with DS and their families, advocacy and professional organizations, and a multidisciplinary community of professionals involved in medical care and scientific research serving people with DS. Through collection of information on demographics, health histories, medications, and other self- reported information from self-advocates and their families, DS-Connect® provides an unprecedented view of this genetic condition that can elicit new research and clinical trials tailored to this population. Additionally, self-advocates and their families enrolled in DS-Connect® are served in several ways, including access to important information and resources, as well as opportunities for research participation. Furthermore, the DS-Connect® datasets inform NIH and researchers to ensure that scientific research in this field is attuned to the needs of the community. Our team brings multidisciplinary expertise in development of patient registries and online research portals, cohort studies of the population with DS, clinical trials in DS, open science approaches, and communication and outreach campaigns in the DS community. We look forward to applying this expertise to transition the DS-Connect® registry to a modernized, secure, and sustainable platform that can serve the diverse stakeholders involved in this important resource.