Have questions about the patient registry? Click on the individual boxes below to reveal answers to frequently asked questions. Afterwards, if you’d still like more information, watch the following video featuring Dr. Trotti from Emory University explain CoRDS Patient Registries at the Hypersomnia Foundation’s 2016 Regional Conference.
Simply put, a patient registry is a collection—for one or more purposes—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.”
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. Therefore, a group of volunteers, including Board members, CoRDS (Coordination of Rare Diseases at Sanford), and the Medical and Scientific Advisory Boards of the Hypersomnia Foundation spent the past two years developing questionnaires to collect standardized information from people who have been diagnosed with one of the central disorders of hypersomnolence: idiopathic hypersomnia, Kleine-Levin syndrome, or narcolepsy (type 1 or 2).
Participating in the Hypersomnia Foundation Registry at CoRDS is a simple way for you to take part in research into the causes and treatments of hypersomnia. 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 what treatments work and those that don’t.
Any person diagnosed with a central disorder of hypersomnolence—idiopathic hypersomnia, narcolepsy type 1 or 2, or Kleine-Levin syndrome—can contribute valuable information. For example, researchers want to know which symptoms are more common to each of these disorders as well as those symptoms that 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. The Hypersomnia Foundation does not have access to any of the information at any time.
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 (> 11 hours/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 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.
Dr. Lynn Marie Trotti of Emory University provided an in-depth presentation about the patient registry in 2016 at the Hypersomnia Foundation’s Regional Conference, #BeyondSleepy in the Mile High City.
If you would like to enroll and complete the CoRDS Patient Registry Questionnaire online, click the ENROLL button below or copy the provided link into your browser to begin the process. (NOTE – It works best with updated versions of Internet Explorer, Google Chrome, or Mozilla Firefox and may not work well with a phone or tablet.) You may also complete registration via regular mail by calling CoRDS at (877) 658-9192 or sending an email to and requesting paper versions of the CoRDS Patient Registry Questionnaire.
Complete the Screening Form by answering each question and clicking SUBMIT at the bottom of the page. You will then be directed to the Login Setup screen.
On this screen, a username will be generated for you based on your name. You will also be asked to create a password and set up a security question. Finally, click the login button to be logged in to your CoRDS Patient Registry Profile in order to begin the Questionnaire.
TIP: Please make note of your username, password, and security question at this time. Should you forget your password at any time, you may request a reset link via email by entering your username and answering your security question. Should you forget your username you may request it be sent to you by entering the email address you provided while completing the screening form.
Once you have logged into your CoRDS Patient Registry Profile, you are now ready to begin the CoRDS Patient Registry Questionnaire. To do so, click the START QUESTIONNAIRE button near the top of the screen.
TIP: Click on the SAVE & NEXT button in the upper right-hand corner of the screen to proceed to the next set of questions. Some people had a hard time finding how to proceed.
TIP: A question requires you to calculate your age at time your symptoms began. Here is a link to an online calculator to help determine age: Age Calculator.
TIP: Take your time. Take a breather. You can save the questionnaire at any point, close out and log back into the registry at a later date (if you remember your username and password). Even if you have clicked SUBMIT at the end of the questionnaire, you can go back at any time and update your answers.
TIP: The questions do not get harder as you go along! In other words, if you come across a couple of tough questions, don’t assume that the rest of the questions will be difficult. Some people find it easier to go through the entire questionnaire to answer all the “easy” questions first, taking note of which questions they need to come back to and complete.
TIP: Because you can move onto the next page even if you have not answered all of the questions on your current page, please review your answers or make note of those questions that you have not answered before saving and clicking to the next page.
TIP: Some of the “pages” are long. Please scroll to the bottom of each page to “submit.”
TIP: Depending on your diagnosis, you might be invited to participate in additional questionnaires from other organizations. It is entirely up to you if you complete those questionnaires.
Once you’ve answered every question to the best of your knowledge and clicked SUBMIT at the end of the questionnaire, you’ve completed the Hypersomnia Foundation’s CoRDS Patient Registry! Remember, you can always return to update answers at any time.
On behalf of the Hypersomnia Foundation, thank you for taking the time to help solve the puzzle of idiopathic hypersomnia and related disorders.