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Mar. 8, 2019

TOPIC: Featured News, Press Releases, Research

NORD IAMRARE APS Type 1 Patient Registry Launched

Posted by Christina Jensen

Last week, a NORD Member Organization and IAMRARE™ Registry Client, The APS Type 1 Foundation Inc., officially launched their patient registry, APS Type 1 (APECED) RegistryNORD’s IAMRARE Registry Program was built to address the special needs of those developing treatments for rare diseases with extensive input from FDA, NIH, patients, organizations and experts in the field. We are pleased to share the press release that was issued last week by The APS Type1 Foundation to announce the launch of their registry.


New York, 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 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 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 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 rare disease.”

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.”

  1. Woodcock, J. “The more we know about rare diseases, the more likely we are to find safe and effective treatments.” FDAVoice (Oct. 23, 2014)

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About The APS Type 1 Foundation

The APS Type 1 Foundation Inc., a 501(c)(3) organization, was established in 2014 in New York to promote education, awareness, and research in Autoimmune Polyglandular Syndrome Type 1 (APS Type 1 or APECED). The Foundation sponsors research through NORD’s directed grants, organizes a bi-annual International Symposium on APS Type 1 and supports a growing community through its website (www.apstype1.org).

Contact:  Jennifer Orange, [Jennifer.orange@apstype1.org], 416-409-9139