Mar. 8, 2019
Posted by Christina Jensen
Last week, a NORD Member Organization and IAMRARE™ Registry Client, GBS\CIDP Foundation, officially launched their patient registry, GBS|CIDP Patient Registry. NORD’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 GBS|CIDP Foundation to announce the launch of their registry.
Conshohocken, PA, February 28, 2019 — GBS|CIDP Foundation International and the National Organization for Rare Disorders today launched the largest-ever study to research GBS|CIDP that causes progressive weakness, sensory loss, and may progress to total paralysis. GBS|CIDP currently has no cure.
The new study, GBS|CIDP Patient Registry, creates a platform for patients around the world to share information about GBS|CIDP. Its purpose is to build an international resource to be used by scientists in future research.
According the GBS|CIDP Foundation’s Executive Director Lisa Butler, “Both conditions and its variants are extremely rare. GBS affects 2 people each year in every 100,000. The prevalence of CIDP is estimated to be as many as 9 in 100,000 individuals.”
To help drive awareness and participation, GBS|CIDP Foundation International will deploy a robust multi-media campaign including social media, e-communications, videos and webinars, for patients to learn more about the GBS|CIDP Patient Registry.
“Our goal is to enroll as many patients, or their parents or legal guardians, as possible,” said Lisa Butler. “The success of the registry is dependent upon community participation.”
The GBS|CIDP Patient 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 from anywhere in the world. The data is made anonymous and stored securely in an online portal called a registry. GBS|CIDP Foundation International may share the data with individuals or institutions conducting research or clinical trials, as approved by the study’s governing board that includes scientists, doctors and patient advocates.
The GBS|CIDP Foundation International 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. The GBS|CIDP Foundation International is a member of NORD and the organizations work together to eliminate the challenges that rare disease patients face.
“Patient-powered registries are changing the landscape of rare disease research,” said Vanessa Boulanger, NORD’s Director of Research Programs. “By building strong partnerships within the community and with leading scientific experts, NORD’s Registry Program is well-positioned to address knowledge gaps and accelerate the development of discoveries that save lives. We are so pleased to welcome GBS|CIDP Foundation International, as a partner in our IAMRARETM Registry Community!”
For more information, visit gbs-cidp.iamrare.org.
About GBS|CIDP Foundation International
The GBS | CIDP Foundation International is a global nonprofit organization supporting individuals and their families affected by Guillain-Barre’ syndrome (GBS), chronic inflammatory demyelinating polyneuropathy (CIDP), and related conditions through a commitment to support, education, research and advocacy.