Frequently Asked Questions About CoRDS

Abbreviations used in this section:

  • PAG (Patient Advocacy Group)
  • IRB (Institution Review Board)
  • SAB (Scientific Advisory Board)

Questions

What is CoRDS?
Why was CoRDS established?
What is the purpose of CoRDS?
How does CoRDS work?
What makes CoRDS unique?
How does CoRDS help advance rare disease research?
Why is CoRDS a registry for all rare diseases?
Why partner with CoRDS?
What if a PAG already has a registry for a specific rare disease?
Who can become a CoRDS Partner?
What is involved in being a CoRDS Partner?
How can patient advocacy groups become involved with CoRDS?
Will CoRDS Partners be able to access CoRDS?
Can CoRDS personnel attend our Annual Conference?

Answers

What is CoRDS?

The Coordination of Rare Diseases at Sanford (CoRDS) is a rare disease patient registry that collects and stores information on individuals affected by a rare disease. 

Why was CoRDS established?

CoRDS was established to help accelerate research into rare diseases because access to information about rare diseases presents a challenge to researchers, physicians, patients, and their families. 

What is the purpose of CoRDS?

By establishing a central rare disease patient registry, CoRDS provides a better way for researchers conducting research studies to learn more about rare diseases. CoRDS also provides researchers with a way to search for individuals who are interested and eligible to participate in a research study. Individuals and families affected by rare diseases can be notified of opportunities to participate in research studies or clinical trials for which they are eligible. 

How does CoRDS work?

CoRDS provides a secure way for participants to make basic health information known to researchers without compromising their privacy.  Individuals who have a diagnosis of a rare disease, an uncommon disease of unknown prevalence, or who are searching for a diagnosis are invited to enroll in CoRDS. Individuals are invited to submit a short Screening Form before completing the Informed Consent Form and brief Questionnaire. Any researchers can apply for access to the CoRDS Registry if they have IRB approval for their research. After approval by the CoRDS Scientific Advisory Board, they will be provided with a username and password to access the CoRDS Registry. CoRDS will contact CoRDS Registry participants on behalf of the researchers with information about the research opportunities and the researcher’s contact information. It is always up to the participant to decide whether or not to participate.

What makes CoRDS unique?

CoRDS is different from other rare disease registries, because:

  • CoRDS collects information on all rare diseases, and has the ability to collate information based on a disease characteristic or symptom. This helps researchers understand the cause rare diseases and develop treatments.
  • CoRDS is IRB-approved, helping researchers at other institutions maintain their own IRB approval while using CoRDS as a tool for study recruitment.
  • The CoRDS Questionnaire is brief and asks simple questions about contact information & diagnosis.
  • CoRDS personnel update participant information annually to maintain accurate data.
  • CoRDS personnel will notify participants of research opportunities related to rare disease research.

How does CoRDS help advance rare disease research?

There are approximately 7,000 rare diseases affecting 25 million Americans and 350 million people worldwide. Research into rare diseases is challenging due to a lack of information. CoRDS was established as a resource to bring rare disease patients and researchers together to accelerate research into these orphan diseases. 

Why is CoRDS a registry for all rare diseases?

Collecting and collating data on all rare diseases creates an opportunity to perform a comparative analysis across disciplines, thereby improving understanding and treatment of each disease. This initiative offers substantially more potential to families, physicians and researchers to make progress for their particular disease of interest.

Partnership with CoRDS

Why partner with CoRDS?

Patient advocacy groups (PAGs) often have an interest in establishing a patient registry for a particular disease, because it can be an effective way to advance research into the disease, and with rare diseases, there is often a lack of data. Establishing a registry can be challenging for PAGs due to the amount of money, time, infrastructure and ongoing support needed. CoRDS provides a secure, centralized registry for all rare diseases, so that PAGs can help connect affected individuals and families with the researchers who study their disease, without investing the PAG’s own limited resources. In this way, CoRDS offers a unique opportunity to advance research and provides a valuable resource to PAGs, individuals, and researchers alike.  

What if a PAG already has a registry for a specific rare disease?

CoRDS is happy to collaborate in any way that is helpful to an organization. If a PAG already has a satisfactory registry, CoRDS can share information and reduce duplicate efforts when indicated by a participant’s Informed Consent Form. If a PAG no longer wishes to host their own registry, CoRDS has the capability and approval to accept a data transfer from an existing registry, and perform any required participant re-consenting.  

Who can become a CoRDS Partner? 

Any organization representing a rare disease, or individuals affected by rare disease, can become a CoRDS Partner. In addition, organizations representing individuals with an uncommon disorder of unknown prevalence are invited to become CoRDS Partners. CoRDS Partners are invited to inform their membership about the opportunity to enroll in CoRDS

What is involved in being a CoRDS Partner?

Sending a mailing to membership & posting information to website

CoRDS will provide the necessary mailing materials or information and information needed. A high-resolution image of the CoRDS logo as well as other web materials are available in the “Partner Toolkit”.

Connecting with CoRDS on Social Media

Find us on Twitter, Facebook, Pinterest, and Tumblr to stay up-to-date on the latest CoRDS news and events. Like, Follow and Share

Sharing information about CoRDS

Tell other rare disease organizations, research institutions, healthcare providers, and advocacy groups about CoRDS and how they might benefit by initiating a patient registry with CoRDS, referring patients to CoRDS, or accessing information in CoRDS.

How can patient advocacy groups become involved with CoRDS? 

There are many different types of CoRDS partnerships to meet the needs of rare disease organizations. PAGs can become a CoRDS Partners if they would be interested in setting up a registry for a particular rare disease, if they would like to move their registry to CoRDS, or if they would simply like to refer their membership to enroll in CoRDS. 

Will CoRDS Partners be able to access CoRDS?

Yes, the Informed Consent Form allows participants to authorize with whom CoRDS can share information. Participants can authorize CoRDS to share information with a specified patient advocacy group for non-research purposes.  A Participation Agreement outlines how the CoRDS Partner can access and use this shared information. Similar to how researchers access CoRDS, a representative from the CoRDS Partner Organization would be given a unique username and password to access the Registry.

Can CoRDS personnel attend our Annual Conference?

CoRDS personnel realize how helpful it is to be present to speak and answer questions in person. Individuals from the CoRDS team often attend conferences of CoRDS Partners to speak and host an exhibit booth. If CoRDS personnel are available, CoRDS would love to attend any Partner’s annual conference. Please contact us with information on your event and to verify availability.