Frequently Asked Questions - Participants

To print this FAQ form, click here.

Questions:

How does CoRDS work?
Why would I want to enroll in the CoRDS registry?
Am I eligible to enroll in CoRDS?
How do I enroll in CoRDS?
Is my information secure?
Who can access to my data?
What if I am already enrolled in a disease registry?
What kind of questions will CoRDS ask me?
How often will I hear from CoRDS?
Why haven’t I been contacted about research?
I can’t login, what do I do?
What do I do if I lost or forgot my username/password?
How do I withdraw from CoRDS?
Where can I learn more about rare diseases?
Can I refer other people to the CoRDS registry?
Who do I contact if I have more questions?

Answers:

How does CoRDS work?
The goal of the CoRDS registry is to connect those affected by rare diseases with researchers who study those rare diseases. The CoRDS Registry is made up of information submitted by individuals with rare diseases or their caretakers. That information, when de-identified, can be accessed by researchers who have appropriate approval in order to find participants that are eligible for their studies. If you are one of those eligible participants, CoRDS personnel will get in touch with you to inform you of the opportunity.

CoRDS provides a secure way for participants to share their de-identified information with researchers. If you have been diagnosed with a rare disease, a disease with unknown prevalence, or don’t yet have a diagnosis, you are invited to enroll in CoRDS by filling out the CoRDS Registry Form and then the CoRDS Informed Consent form and Questionnaire. Researchers who study rare diseases can apply to access the registry’s de-identified database. That means that the researchers will not see any of your identifying information such as name or address. If you are a potential fit for the researcher’s study, CoRDS personnel will contact you to share the opportunity. It is always up to you if you would like to participate in any study or clinical trial. If applicable, you may also consent to share your information with certain patient advocacy groups (PAGs) and/or existing registries.

Why would I want to enroll in the CoRDS registry?
The CoRDS registry provides opportunities to be informed of research studies or clinical trials for which you may be eligible. It also creates a central resource for researchers for more rapid recruitment of research participants. The CoRDS registry has the potential to accelerate research into rare diseases. It is also free to enroll and takes little time!

Am I eligible to enroll in CoRDS?
The CoRDS registry is open to any individual, of any age, who has been diagnosed with a rare disease, a disease of unknown prevalence or is still awaiting a diagnosis.

How do I enroll in CoRDS?
There are three steps to enrollment in the CoRDS registry:

  1. Complete the CoRDS Registry Form to enter screening, where CoRDS personnel will review your eligibility and send you the materials to enroll via your preferred enrollment method.
  2. Complete the CoRDS Informed Consent Form which describes how your information is kept and used in order to be considered enrolled in the registry.
  3. Finally, complete the CoRDS Questionnaire, which is a short questionnaire with contact, clinical, and demographic information to be stored in the CoRDS registry.

Is my information secure?
Yes, we take your privacy and security very seriously. Your identifiable information can only be accessed by CoRDS personnel and any patient advocacy group with whom you consent to share your information. All electronic information is stored in the secure Velos eResearch Clinical Research Management System. All hard copy information, such as consent forms and questionnaires, is stored in a locked fireproof cabinet. Every possible effort will be made to maintain confidentiality- and if a breach ever occurs, CoRDS personnel will contact you.

Who can access to my data?
There are three different ways data may be shared:

  • Researchers: The de-identified information in CoRDS will be made available to researchers studying rare, uncommon, or undiagnosed disorders if they have obtained approval for their research project from (1) the Institutional Review Board (IRB) at the researcher’s institution and (2) the CoRDS Scientific Advisory Board led by Dr. David A. Pearce. (An IRB is a group of scientists and laypersons from the community (i.e. lawyers, clergy, professors) who review proposed research using human subjects. The IRB will review the research to ensure that CoRDS participants’ rights are upheld.)
  • Other Patient Registries: A subset of de-identified information collected from each profile can be shared with certain other databases. CoRDS shares data with other databases in order to help improve understanding of rare diseases, to avoid the duplication of efforts, and to collaborate with existing research efforts and organizations dedicated to rare diseases.
  • Patient Advocacy Groups: Patient advocacy groups (PAGs) representing individuals with rare or uncommon diseases who have partnered with CoRDS may also request access to information in CoRDS that may or may not include participants’ names. The PAG will sign an agreement stating that they will not use the information for research purposes. If a participant indicates that they would like their information shared this way, Dr. David A. Pearce and CoRDS personnel will not be held responsible for the use of information by the PAG.

You will have the option to choose which ways you would like your data shared.

What if I am already enrolled in a disease registry?
You can still enroll in the CoRDS registry! CoRDS offers a unique opportunity for individuals with rare diseases by creating a central repository for all rare diseases instead of single diseases at a time.

What kind of questions will CoRDS ask me?
The CoRDS questionnaire will ask you for basic contact, demographic, and clinical information as well as your interest in future research participation. The questionnaire is designed to be relevant to all rare diseases as outlined by the NIH Office of Rare Disease Research (ORDR) in their Common Data Elements.

How often will I hear from CoRDS?
At minimum, you will hear from CoRDS annually, when it is time to update your information on the CoRDS questionnaire. If a researcher requests that we contact you on their behalf, we will do so to inform you of the research opportunity.

Why haven’t I been contacted about research?
We do not know how often researchers will want to contact our participants, though our Scientific Advisory Board reviews requests regularly and work as quickly as possible to provide any opportunity for research participation. It is also possible that a researcher has not yet requested to get in touch with you, or that we don’t have the correct contact information in our database- so be sure to keep your information up to date!

I can’t login, what do I do?
We try to fix any bugs in our system as quickly as possible and we apologize for any inconvenience these may cause you. Please email us at CoRDS@sanfordhealth.org or call our toll free number 1-877-658-9192 to reach CoRDS personnel who would be happy to help you troubleshoot.

What do I do if I lost or forgot my username/password?
If your username and password aren’t working or you have lost track of them, email us and we will reset and resend it to you!

How do I withdraw from CoRDS?
If you wish to withdraw from the CoRDS registry, please send us an email or call us to let us know. We will then give you the opportunity to decide what you would like us to do with your data.

Where can I learn more about rare diseases?
If you would like to learn more about rare diseases, visit out Learn page to find helpful links and educational material developed here at Sanford Research. You can also visit our video library to see some helpful videos!

Can I refer other people to the CoRDS registry?
Of course! Anyone who may be interested in learning more about or enrolling in the registry is welcome to submit the CoRDS Registry Form or contact CoRDS personnel to learn more!

What do I contact 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 locally, at 1-605-312-6413 or by email at cords@sanfordhealth.org.

Scroll to Top