CDG Patient Registry

RDCRN Contact Registry

Why the RDCRN Contact Registry?

The Rare Diseases Clinical Research Network (RDCRN) is a national network of top rare diseases researchers, powered by patient partnerships and funded by the National Institutes of Health. The RDCRN Contact Registry collects and stores the contact information of people who want to participate in RDCRN-sponsored research or learn more about our research. It connects patients with researchers in order to advance rare diseases research. The Frontiers in Congenital Disorders of Glycosylation (FCDGC) is part of the RCDRN.

What is the RDCRN Contact Registry?

A contact registry is a database that collects and stores information about patients diagnosed with specific diseases. The RDCRN Contact Registry connects interested patients to clinical trials (research studies) underway within the RDCRN. It also allows the RDCRN and RDCRN-affiliated consortia (research groups) and patient advocacy groups to share information about their research with interested patients and others.

Why should I join the RDCRN Contact Registry?

Joining the RDCRN Contact Registry allows you to connect with the larger RDCRN community. You will learn about opportunities to participate in RDCRN research and receive information about our work. You may be invited to join a research study. You could be invited to serve as a control subject for a study (part of a comparison group) or respond to a survey. You can share your contact information with RDCRN-affiliated consortia (FCDGC) and patient advocacy groups (Amour Fund). You can also subscribe to the RDCRN newsletter to learn more about our work.

How is the RDCRN advancing rare diseases research?

RDCRN consortia are studying 175 rare diseases at more than 270 sites in the United States and around the world. We host the tools and services needed to make large-scale research studies possible. We also directly interact with patients and their advocates and train new investigators (scientists and doctors) in rare diseases research.

CDG Connect Patient Insights Network (PIN)

CDG Connect PIN is a safe and confidential platform designed to benefit patients, caregivers, advocates, and researchers through information sharing. By organizing and integrating data from patient input all over the world, it creates a database of critical clinical information that will not only aid researchers studying CDG, but also permit patients and caregivers to learn about therapies and treatment options currently in the pipeline. Once you register yourself with CDG Connect, in addition to sharing your valuable experiences, you will get the opportunity to learn about current progress in the field of CDG. Your contributions will serve to support new discoveries to improve patient lives. Collectively, we can add more value to the CDG Connect community! Enroll through CDG Connect to help researchers seeking to improve therapeutics for CDGs!