Registry for Rare Diseases
(CoRDS Trial)
What You Need to Know Before You Apply
What is the purpose of this trial?
This trial connects patients with rare diseases to researchers through a centralized patient registry. By enrolling, patients help scientists understand and develop treatments for over 7,000 rare diseases. Those diagnosed with a rare disease, have a disease with unknown prevalence, are undiagnosed, or are unaffected carriers of a rare disease might be suitable for this trial. Joining the registry is free and supports new discoveries and potential cures. As an unphased study, this trial offers a unique opportunity to contribute to groundbreaking research and potentially accelerate the discovery of new treatments.
Do I have to stop taking my current medications for this trial?
The trial information does not specify whether you need to stop taking your current medications. It's best to check with the trial coordinators for more details.
Why are researchers excited about this trial?
Researchers are excited about the Rare Disease Patient Registry & Natural History Study because it offers a new way to gather comprehensive data on rare diseases, which is different from current treatment-focused approaches. Unlike traditional treatments that target symptoms, this registry aims to collect detailed information about the progression and characteristics of rare conditions. By systematically compiling patient data, researchers hope to uncover patterns, identify potential new treatment targets, and improve the overall understanding of these diseases. This could lead to more targeted and effective therapies in the future.
Are You a Good Fit for This Trial?
Inclusion Criteria
Timeline for a Trial Participant
Screening
Participants are screened for eligibility to participate in the trial
Enrollment
Participants enroll in the CoRDS registry and provide contact, sociodemographic, and health information
Annual Follow-up
CoRDS contacts participants annually to confirm continued interest and update information
What Are the Treatments Tested in This Trial?
Interventions
- Patient Registry
Find a Clinic Near You
Who Is Running the Clinical Trial?
Sanford Health
Lead Sponsor
International WAGR Syndrome Association
Collaborator
TBX4Life
Collaborator
Cure DHDDS
Collaborator
ML4 Foundation
Collaborator
Lambert Eaton (LEMS) Family Association
Collaborator
Noah's Hope - Hope4Bridget Foundation
Collaborator
International Association for Muscle Glycogen Storage Disease (IamGSD)
Collaborator
Athymia
Collaborator
Scheuermann's Disease Fund
Collaborator