We’ve Got Answers About CoRDS
If you or a loved one has been diagnosed with a rare disease, you have a million questions. We understand. And we’re working to find the answers.
We work with researchers and advocacy groups across the globe answering questions about rare disease.
Want to know how the Coordination of Rare Diseases at Sanford works? How to enroll? Whether your information is secure? Find answers to those and other frequently asked questions below.
Patient & Family FAQ
How does CoRDS work?
The goal of the CoRDS registry is to connect those affected by rare diseases with researchers who study rare diseases. The CoRDS registry is made up of data submitted by individuals with rare diseases or their caretakers.
CoRDS provides a secure way for participants to share their data (with personally identifiable information removed) 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 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) 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:
- Complete the CoRDS Screening Form, where CoRDS personnel will review your eligibility and send you the materials to enroll via your preferred enrollment method.
- Complete the CoRDS Informed Consent Form which describes how your information is kept and used in order to be considered enrolled in the registry.
- 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 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 Patient Enrollment site. 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 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 and professors) from the community 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 to help improve understanding of rare diseases, to avoid 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 they will not use the information for research purposes. If a participant indicates that they would like their information shared this way, Dr. 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 works 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 log in. What do I do?
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?
Where can I learn more about rare diseases?
If you would like to learn more about rare diseases, visit our Patients and Visitors page to find helpful links and educational material developed here at Sanford Health. You also can visit our video library to watch videos about rare disease.
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 Screening Form or contact CoRDS personnel to learn more.
Who do I contact if I have more questions?
Researcher & Advocate FAQ
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 others 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 studies or clinical trials to search for individuals who are interested and may be able to participate. 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
- Help medical professionals improve treatment of patients with rare diseases
- Notify individuals of opportunities for clinical research studies or clinical trials
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 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 what causes 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 and 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.
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 patient advocacy group 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?
CoRDS partners help spread the word about CoRDS by:
- Sending a mailing to your membership and posting information about CoRDS on your website. CoRDS will provide the necessary mailing materials and information needed.
- Sharing information about CoRDS with your network. Tell other rare disease organizations, research institutions, health care providers and advocacy groups about CoRDS. Let them know how they might benefit from initiating a patient registry with CoRDS, referring patients to CoRDS or accessing information in CoRDS.
- Connecting with us on social media. We’re on Facebook and Twitter.
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 receives a unique username and password to access the registry.
Can CoRDS personnel attend our annual conference?
CoRDS personnel realize how helpful it is 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 check availability:
What type of information will be available to approved researchers?
Researchers will only see de-identified patient data – data stripped of personally identifiable information.
The CoRDS questionnaire is 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 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.
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.