Join our international patient registry

Simply put, a patient registry is a collection of standardized information about a group of patients who share a condition or experience. According to a publication from the Agency for Healthcare Research and Quality Research, “Patient-powered registries and patient-powered research networks offer new directions for patient-centered outcomes research, and contribute to translational science in important ways. Experts agree that these registries are transforming patient/caregiver support and advocacy groups into research organizations. They also provide patients and family members another way to become engaged in research beyond the role of advisor or informant to researcher-generated studies.”

“…CoRDS is a centralized international patient registry for all rare diseases. The goal of the CoRDS registry is to connect as many patients and researchers as possible to help advance treatments and cures for rare diseases.” – CoRDS

In 2015, Dr. Michael Twery, Director of the National Center on Sleep Disorders Research at the National Institutes of Health, told the Hypersomnia Foundation that establishing a patient-powered registry was the most important thing that we could do. Thereafter, a group of volunteers, including Board members, CoRDS (Coordination of Rare Diseases at Sanford) personnel, and the Medical and Scientific Advisory Boards of the Hypersomnia Foundation spent two years developing questionnaires to collect standardized information from people who have been diagnosed with idiopathic hypersomnia and related disorders.

Participating in the Hypersomnia Foundation Registry at CoRDS is a great way for you to take part in research into the causes and treatments of hypersomnias. When we all complete the questionnaires, researchers will be able to compare our answers with those of hundreds, if not thousands, of others. The researchers will then be able to detect patterns, identify common symptoms, better define the disorders, and gain insights into which treatments work and which do not.

Any person diagnosed with a central disorder of hypersomnolence — including idiopathic hypersomnia, narcolepsy type 1 or 2, Kleine-Levin syndrome, hypersomnia due to a medical condition, or hypersomnia associated with a psychiatric condition — can contribute valuable information and should participate. For example, researchers want to know which symptoms are more common to each disorder as well as which symptoms affect everyone with one of these disorders.

Anyone can gather information on the Internet through polls, questionnaires, or surveys, but to publish their results in a medical journal, researchers can use only information that has been obtained in a very specific manner, which incorporates legal informed consent and privacy regulations. Therefore, CoRDS has put many safeguards into place to ensure that researchers can use the information you provide.

The first step is called Institutional Review Board (IRB) approval. The IRB at Sanford Research approved not only the CoRDS registry questionnaire, but also the hypersomnia-specific questionnaire that is part of the registry. Any researchers who want to use the information in the registry also have to first obtain approval from their own IRBs and then a second approval from the Sanford IRB.

The second step in safeguarding your information is informed consent. This means that, in the process of signing up to participate in CoRDS, you are given a chance to read information about the registry, and you then sign a form that indicates you understand what you are doing. You can sign this form either electronically, if you are filling out the questionnaires online, or with a pen, if you are completing the paper version of the registry. If you have any questions, you can call or send an email to CoRDS before you sign the consent form.

Thirdly, the information you provide is kept strictly confidential. The questionnaires that you complete will never be associated with your name—a computer generates an ID number that is assigned to your identifiable information (name, address, etc.) and to your responses to the questionnaires. Your identifiable information is then kept in one database, and your questionnaire responses, tagged only with the ID number, are in a separate database (this is called de-identified data). Once researchers receive approval to look at the registry or questionnaire responses, they will be given only the de-identified data. Please note that the Hypersomnia Foundation can only access your de-identified information if you choose to share it with us when you complete your registry questionnaire.

Your privacy is also protected even if you indicate on your questionnaire that you are willing to be contacted to participate in additional research projects. For example, researchers might contact CoRDS and tell them that they want to send an additional questionnaire to all participants who have a specific symptom, such as long sleep time (more than 11 hours in 24 hours). CoRDs personnel would then contact everyone in the registry who indicated that they sleep for more than 11 hours per day and would like to participate in additional studies. CoRDS would then provide these people with the researchers’ contact information, and it would be up to the individual people whether they contact the researchers to participate in the additional research.

Updates can be done any time and should only take 10-15 minutes, as there are no new questions at this time. But updates should be done at least annually, after any significant change in your medical history, and immediately after your 18th birthday. Please note that, if you enrolled in the registry as a minor, your data becomes inaccessible 30 days after your 18th birthday unless and until you re-enroll.