APS Type 1 Community Launches Registry to Share Knowledge with Scientists to Support New Discoveries
Research study is open to participants worldwide
to advance understanding and treatments for rare autoimmune disease.
Stony Brook, NY, February 28, 2019—The Board of Directors of The APS Type 1 Foundation Inc. is pleased to announce today’s launch of the first web-based APS Type 1 (APECED) Registry, where
patients and their families can input data about their disease at https://apstype1.iamrare.org.
“The APS Type 1 (APECED) Registry will provide a complete picture of each patient’s experience,”
said APS Type 1 Foundation Board Member, Jennifer Orange. “We are launching this initiative to
provide much needed patient data to medical researchers in order to help earlier diagnosis, enhance
patient quality of life and discover a cure for this and other autoimmune diseases.”
The APS Type 1 (APECED) Registry, the APS Type 1 Foundation’s web site (www.apstype1.org), as
well as print, TV, radio and social media campaigns will help our community grow, and share our
knowledge with both patients and scientists as we support new discoveries. Participation is especially
vital given the rarity of APS Type 1.
The APS Type 1 (APECED) Registry is a natural history study that consists of electronic surveys to
collect information about the patient experience and disease progression. Patients, or their caregivers or
guardians, can enter information at https://apstype1.iamrare.org from anywhere. The data is made
anonymous and stored securely in an online portal called a registry.
The APS Type 1 Foundation is launching the study in collaboration with the National Organization for
Rare Disorders (NORD), an independent charity that built its natural history study platform as part of its
mission to help identify and treat all 7,000 rare diseases. Funding is supported by a cooperative agreement
between NORD and the U.S. Food and Drug Administration (FDA). The FDA has praised NORD’s
program as a helpful tool “that protects the security and privacy of personal information, while making
valuable information available to a researcher or drug developer interested in creating a new therapy for a
NORD President and CEO Peter L. Saltonstall said, “NORD’s natural history studies platform empowers
patients and families to drive research and eliminate some of the unknowns that still exist in rare diseases.
We are glad to be working with our Member Organization on this project and thank the FDA for its
support and ongoing commitment to help people with rare diseases.”