PatientCrossroads Launches New Patient Registries.
The new rare-disease registries arose from the NIH Global Rare Diseases Registry (GRDR) pilot program.
SAN MATEO, CALIF. (PRWEB) SEPTEMBER 04, 2014
PatientCrossroads announces the launch of five new patient registries on behalf of leading rare disease advocacy organizations. The new registries are sponsored by organizations originally selected by the NIH to participate in its Global Rare Diseases Registry and Repository (GRDR) pilot program. At the conclusion of the pilot, a number of organizations chose to pursue the continued development of their own registries and manage them through PatientCrossroads.
Five New Patient Registries Launch Through the PatientCrossroads Program: The Barth Syndrome Foundation, Foundation for Sarcoidosis Research, Lymphangiomatosis and Gorham’s Disease Alliance, NephCure Kidney Network and PSC (Primary Sclerosing Cholangitis) Partners Seeking a Cure registries have been launched using the PatientCrossroads registry platform.
“We see tremendous value in starting a patient registry as a powerful and practical step toward advancing the research initiatives of the Sarcoidosis Research community. The registry has been collecting data since June and we have registered over 800 patients in that short time.” said Ginger Spitzer, Executive Director of the Foundation for Sarcoidosis Research. “The PatientCrossroads approach fits well with the foundation’s goal to have promising therapies move quickly from the laboratory to the patient.” The registries will be able to collect patient-provided data in a manner that contributes to pan-disease research.
“One of the important learnings from the GRDR pilot was that patient registries are expensive, complex and challenging for rare-disease organizations to maintain on their own,” said Kyle Brown, founder of PatientCrossroads. “Only by using a common platform can the complexity and cost of managing patient registries be minimized to make them available to any rare disease community. By using our platform, disease organizations get the full benefits of patient registries while also freeing more of their capital for other purposes, such as funding research programs and directly supporting patients.”
About PatientCrossroads: Since 2005, PatientCrossroads has pioneered the use of patient registries to accelerate therapeutic development and empower patients. PatientCrossroads registry programs connect patients with researchers, advocates and industry organizations working to understand or treat specific diseases and conditions. Dedicated to openly accessible registry programs, PatientCrossroads has been recognized for its efficacy through national and international awards and partnerships. Its groundbreaking CONNECT patient registry platform allows de-identified patient information from multiple diseases to be shared and used to research diseases, find new treatments, and better educate and support patients and their families. For more information, visit http://www.patientcrossroads.com.
https://www.prweb.com/releases/2014/08/prweb12133961.htm
