Cure GM1, a 501(c)(3) nonprofit organization located in Albany, CA, USA is proud to announce a unique collaboration with xCures for the development of a new rare disease pilot for an electronic natural history study for GM1 gangliosidosis. Cure GM1 is the only patient advocacy group in the United States entirely dedicated to GM1 gangliosidosis research, advocacy, and development of potential new therapeutics.
xCures goal is enabling patients to contribute their medical records for research, by connecting patients and their treating physicians to services including clinical programs (eg, clinical trials, patient support programs and observational studies) and patient support or navigation services for these programs. xCures platform assists in (is the basis for?) generating a personal health record for each patient, with prospective updates for navigating their care journey. As a derivative of these services, xCures creates data that can be leveraged and licensed for clinical trials and clinical research.
While xCures initial focus has been in oncology, Cure GM1 and xCures are excited to initiate a new collaboration to help develop a special rare disease protocol for GM1 gangliosidosis which may be broadly applicable to similar neurologic and degenerative diseases.
For GM1 families and rare disease organizations, this new foray will expand the access to and organization of meaningful, regulatory-grade, source-verified, rare-disease data.