Join the International Patient Registry

Help
solve the
puzzle.

If you have been diagnosed, anywhere in the world,* with idiopathic hypersomnia, Kleine-Levin syndrome, narcolepsy, or hypersomnia associated with certain other conditions,** you can make an important contribution to hypersomnia research.

* Although the registry is currently available only in English, you may receive help from a trusted physician or family member to enter your information in English. If you have any questions, please contact CoRDS at  or 1-877-658-9192.

** In addition to IH, narcolepsy, or KLS, if you enter any of the following 4 other rare conditions (including all their synonyms and subtypes), CoRDS will automatically direct you to the Hypersomnia Foundation’s registry: 1) Ehlers-Danlos syndrome; 2) myotonic dystrophy; 3) POTS (postural tachycardia syndrome); or 4) Prader-Willi syndrome. However, if you have hypersomnia associated with another condition, such as Parkinson’s disease, chronic fatigue syndrome, fibromyalgia, etc, you will need to also enter one of the following rare disease diagnoses in order to gain access to the Hypersomnia Foundation’s registry: either (1) hypersomnia due to a medical condition; or (2) hypersomnia associated with a psychiatric condition.

Sharing information about your symptoms, your previous treatments, and your diagnostic journey in the Hypersomnia Foundation’s Registry at CoRDS (Coordination of Rare Diseases at Sanford) holds the key to solving this complicated puzzle of rare sleep disorders. Below, you’ll find informative answers to FAQs and a step-by-step guide on how to enroll (or update) today.

If you have any questions, please contact or 1-877-658-9192.

Click Here to EnrollClick Here to Update

FAQs

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 video below featuring Dr. Lynn Marie Trotti from Emory University explaining CoRDS Patient Registries at the Hypersomnia Foundation’s 2016 conference.

What is a registry?

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.” – CoRDS

Why a hypersomnia registry?

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.

What’s the purpose of the registry?

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.

Who should participate in the patient registry?

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.

What about my personal information?

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.

When should I update my registry questionnaire?

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.

Registry Growth & Results

As of November 2019, the Hypersomnia Foundation Registry at CoRDS has nearly 2000 participants. Please help us continue to grow by enrolling today and sharing this page! And check out the Summary Report below, as well as some initial RESULTS.

Still have questions?

Dr. Lynn Marie Trotti of Emory University provided an in-depth presentation about the patient registry in 2016 at the Hypersomnia Foundation’s conference, #BeyondSleepy in the Mile High City.

Ready to Get Started?

If you would like to enroll and complete the CoRDS Patient Registry Questionnaire online, click the ENROLL button below. (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.

Enroll

You can view or download the paper version of the questionnaire HERE. However, we strongly encourage you to request a copy directly from CoRDS. Also, please note that if you choose to print and complete this paper form, instead of requesting one directly from CoRDS, then you will be responsible for postage costs.


Step 1

Setup a CoRDS Profile

SCREENING FORM
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.

LOGIN SETUP
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. After you create a password and set up a security question, you then 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 that it be sent to you by entering the email address you provided while completing the screening form.


Step 2

Complete CoRDS Questionnaire

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 difficulty determining how to proceed.

TIP: A question requires you to calculate your age at the time your symptoms began. Here is a link to an online calculator to help determine age: Age Calculator.

TIP: In order to access the Hypersomnia Foundation registry, you will need to enter an appropriate diagnosis. For these purposes, an “appropriate diagnosis”  includes: 1) idiopathic hypersomnia (otherwise known as primary hypersomnia, hypersomnolence disorder, idiopathic hypersomnia with long sleep time, or idiopathic hypersomnia with short sleep time); 2) narcolepsy type 1 (otherwise known as narcolepsy-cataplexy or Gélineau disease); 3) narcolepsy type 2 (otherwise known as narcolepsy without cataplexy); 4) Kleine-Levin syndrome; 5) Ehlers-Danlos syndrome (including its numerous subtypes); 6) POTS (postural tachycardia syndrome); 7) Prader-Willi syndrome (including its numerous subtypes); or 8) myotonic dystrophy (including its numerous subtypes). If you have hypersomnia due to another medical condition, such as Parkinson’s disease, you will need to also enter a rare disease diagnosis of hypersomnia due to a medical condition. And if you have hypersomnia associated with a psychiatric condition (such as bipolar), you  will need to also enter a rare disease diagnosis of hypersomnia associated with a psychiatric condition.


Step 3

Complete Hypersomnia Questionnaire

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 (remember to record 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. (You can always go back to finish any unanswered questions later).

TIP: Some of the online “pages” are long. Please scroll to the bottom of each page before clicking “Save and Next”.

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.


SUBMIT

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, and you should plan to update your questionnaire at least annually, after any significant change in your medical history, and immediately after your 18th birthday. Please mark your calendar now, and then congratulate yourself for making an important contribution to research!

On behalf of the Hypersomnia Foundation, thank you for taking the time to help solve the puzzle of idiopathic hypersomnia and related disorders.

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