Patient Registries

JOIN A CDG PATIENT REGISTRY

Patient registries are an extremely powerful tool for rare disease research as they allow researchers to collect critical information about patients living with a specific disease. Patient registries can be used to observe the natural course of disease, also called the natural history, identify factors that influence prognosis and quality of life, help develop new diagnostic tools and facilitate the development of new therapies.

CDG CONNECT PATIENT INSIGHTS NETWORK (PIN)

CDG Connect is a confidential patient registry that collects clinical information from CDG patients across the globe. This clinical information can help to inform and advance research and understanding of CDG, with the aim of helping researchers develop new treatments and improving the lives of CDG patients. In addition, by enrolling in the registry, patients and caregivers can access registry insights and also learn more about new and emerging CDG therapies, clinical trials and current progress in the field. Join CDG Connect today!