Frequently Asked Questions - Researcher

Questions

What is CoRDS?
What type of information will be available to approved researchers?
What disorders are represented in the registry?
Is there a cost to access CoRDS?
How are you funded and how do you plan to sustain this registry?
Who can apply for access to the data in CoRDS?
I’m a researcher with IRB approval -- how do I apply?
What can I do if I have more questions?

Answers

What is CoRDS?

The Coordination of Rare Diseases at Sanford (CoRDS) is a registry that stores information on individuals affected by a rare disease (and who have not yet been diagnosed with a rare disease) to help accelerate research into rare diseases. It was developed because access to information about rare diseases presents a challenge to researchers, physicians, patients, and their families.

CoRDS provides a better way for researchers conducting research studies or clinical trials to search for individuals who are interested and may be able to participate in their clinical trial. The CoRDS registry also keeps individuals and families aware of any opportunities to participate in research studies or clinical trials.

Rare disease registries help researchers:
  • Learn how certain treatments of rare diseases may or may not be effective
  • Accelerate their research efforts by storing individual information that is accessible for the recruitment and contact of potential participants for clinical research studies
  • Assist medical professionals improve treatment of patients with rare diseases
  • Notify individuals of opportunities for clinical research studies or clinical trials

What type of information will be available to approved researchers?

Researchers will only see “de-identified” patient data. The CoRDS questionnaire is very brief and includes questions about demographic information, clinical diagnosis, when and how the diagnosis was confirmed, and if the participant has interest in participating in future research studies and/or clinical trials. The questions cover all required and several recommended topics in the most recent version of the Common Data Elements (CDE), published by the Office of Rare Disease Research (ORDR). Researchers who are interested in including CoRDS participants in their research studies will contact CoRDS personnel who will then notify the individuals of the research opportunity.

CoRDS partners with patient advocacy groups (PAGs) to develop disease specific questionnaires which provide additional clinical and diagnostic data on participants.

What disorders are represented in the registry?

Click here to see which disorders are represented and how many patients of each have registered.

Is there a cost to access CoRDS?

No, there is no cost to access the registry.

How are you funded and how do you plan to sustain this registry?

CoRDS is funded internally through the Sanford Children’s Health Research Center at Sanford Research and through a Sanford Health Foundation grant.

Who can apply for access to the data in CoRDS?

Any researcher with IRB or ethics committee approval can apply for review by our advisory board, convened by CoRDS founder David Pearce, PhD.

I’m a researcher with IRB approval -- how do I apply?

If you are a researcher interested in accessing the CoRDS Registry, please complete the CoRDS Researcher Access Request Form and return it to cords@sanfordhealth.org.

What can I do if I have more questions?

Please contact us if you have any additional questions! CoRDS Personnel can be reached at:

Toll-Free: 1-877-658-9192