Rare Disease Patient Registry & Natural History Study - Coordination of Rare Diseases at Sanford (NCT01793168) | Clinical Trial Compass
RecruitingNot Applicable
Rare Disease Patient Registry & Natural History Study - Coordination of Rare Diseases at Sanford
United States, Australia20,000 participantsStarted 2010-07
Plain-language summary
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access. Visit sanfordresearch.org/CoRDS to enroll.
Who can participate
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Inclusion Criteria:
* Diagnosis of a rare disease, a disease of unknown prevalence, undiagnosed or an unaffected carrier of a rare/uncommon disease
Exclusion Criteria:
* Diagnosis of a disease which is not rare
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1Since this is a registry and natural history study — not a treatment trial — what does participation actually involve for someone with my specific diagnosis, such as how often data would be collected and what kinds of information would be shared with researchers?
2Could joining this registry at Sanford help connect me with researchers or specialists who are actively studying my condition, and is that something you think would be worthwhile given how rare my diagnosis is?
3Because this study covers hundreds of rare and undiagnosed conditions, does it have any specific researchers or projects currently focused on my particular diagnosis, or would my data mainly be contributing to future research?
4Would participating in this registry conflict with, delay, or affect my ability to enroll in any treatment trials that might become available for my condition in the future?
5For a condition as rare as mine, do you think a natural history registry like this is one of the more useful steps I can take right now, or are there other specialist centers or disease-specific registries you'd recommend I look into alongside or instead of this one?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
What they're measuring
1
To accelerate research into rare disorders by connecting individuals who are interested in research and who have been diagnosed with a rare disorder (or a disorder of unknown prevalence, or who are undiagnosed) with researchers who study rare diseases.