Hypersomnia Australia is designating September 5- 11th as Idiopathic Hypersomnia Awareness Week. Their theme this year is Improving Quality of Life.
We can’t think of a better way to improve the lives of people with Idiopathic Hypersomnia than to make a special push toward research and finding new treatments – and one day, a cure.
Throughout the month of September, YOU can have a big impact on working towards these goals. The Hypersomnia Foundation’s Board will donate $50 to the Foundation’s Restricted Research Fund for every person with hypersomnia (or a related sleep disorder) who completes the patient registry at CoRDS by September 30th!
So, by registering with CoRDS and completing the registry by the end of September, you score a double win: your completed questionnaire gives researchers another piece of the puzzle and you raise $50 towards funding research. (If you began the questionnaire but didn’t finish it, coming back to complete counts!]
Read on for more details and tips for completing the registry, and then click the CoRDS link below to get started today!
What is the Coordination of Rare Diseases at Sanford (CoRDS) registry?
“…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.” Be assured that your identity is completely confidential. Your personal information will be given an ID number, which will then be linked with your responses to questionnaires – no researcher or the Hypersomnia Foundation will ever be able to connect your personal information with your ID number.
Who should participate in the CoRDS hypersomnia-specific registry?
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.
If my identity is protected, how will HF know if I have completed the registry?
CoRDS will simply provide the number of registrations on of September 1st and 30th.
OK, I’m ready to make my contributions to research!! How do I get started??
You can also complete registration via regular mail by calling CoRDS at (877) 658-9192 or sending an email to email@example.com and requesting paper versions of the Registry materials. If you would like to complete it online, click the link below or copy it into your browser. (It works best with updated versions Internet Explorer, Google Chrome, or Mozilla Firefox.)
OK, I’m on the site – now what?
Step 1: You will be asked to answer some basic questions in a SCREENING FORM.
TIP: Once you have completed the screening form and clicked submit, on the next screen, your first name will become your user name. You will be asked to select a password and set up a security question. Please make note of these responses.
The next screen confirms that you have submitted your screening form, but you are not yet enrolled.
Step 2: : Click the button at the top of the screen that says, Start Questionnaire.
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: http://images.pearsonclinical.com/images/ageCalculator/ageCalculator.htm
Step 3 – the most important part!: The final piece is the Hypersomnia Questionnaire. Please be as complete as possible in answering these questions. Although none of the questions are required, researchers may not be able to use your responses in their work if you do not answer all of the questions.
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 in (if you remember your user name 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 HAVE COMPLETED EVERYTHING AND CLICKED SUBMIT – CONGRATULATIONS!
You’ve made a very valuable contribution to solving the puzzle of Hypersomnia. And if you have completed your questionnaire by September 30th, you’ve also earned $50 for research!
We are most grateful to the members of the PAAC (People with hypersomnia And Advocates Council), who have completed the Registry and provided these valuable tips. If you have any questions about the enrollment process or how to complete the three steps, please contact CoRDS at (877) 658-9192 or firstname.lastname@example.org
If you have already completed the CoRDS registry, fantastic! Please help get the word out to the hypersomnia community and encourage others to take part and complete it. If not, please enroll in the Hypersomnia Registry at CoRDS today. Your enrollment during the month of September will provide answers and simultaneously fund research. Together we can solve the puzzle of hypersomnia one piece at a time!