Watch this video interview with Tracy Hans (founder of Hypnicjerking.com), Nikola Mihajlovic (FB Moderator), and Alyssa Mendel (Clinical Research Specialist, Sandford CoRDS). Learn more about how to complete the CoRDS Registry Survey and why it's so important.
Research on Rare Disease:
Our Study on Hypnic Jerking
INSTRUCTIONS
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Keep this page open as you complete the survey for reference.
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You might see this study referred to as a survey, a registry or a questionnaire. It all refers to the same thing. There are two parts to it. The first is a more general form for you to fill out that is standard to CoRDS. The second part is one that is specific to the hypnic jerking condition. It is necessary for you to fill out both parts.
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Be sure to not click on the survey link until after you have read the tips below in full. We suggest that you have these instructions beside you when completing the survey.
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It is recommended that you complete this survey from a computer or laptop (it might be a problem to do so on a mobile phone or small device). Instead of taking this online, you have two other options: 1. You can request a paper survey to be mailed to you, or 2. You can request the survey to be read to you over the phone and for Sanford staff to click on the answers for you.
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This survey doesn’t need to be taken all at once, you can keep coming back to it. The pages you have completed will be saved. After creating a password for the Sanford site, you will receive a web link so that you can always log in to view or update your responses.
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At any time, if anything changes for you (overall health, condition status, contact information, etc), update your responses. You will also be reminded via email to update your information on an annual basis.
Tips to completing the hypnic jerking portion of the survey:
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When you see a magnifying glass next to a question, be aware that these are “search and drop down” boxes. Be sure to click on the options in the window as you are typing or as you are asked, otherwise the screen will say your answer is incomplete.
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On the initial (CoRDS) section of the survey, you will see the terms “diagnosis” and “disease”. For your purposes this refers to the condition of hypnic jerking / sleep myoclonus (which we are aware is not an identified formal diagnosis or disease).
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Please enter either “hypnic jerking” or “sleep myoclonus” in the Rare Disease Diagnosis box (as your disease). You should do this even if you haven’t been given this diagnosis by a doctor. Participants can also choose Excessive Fragmentary Hypnic Myoclonus. All of these terms will open up to the detailed part of our survey.
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Please remember to click on the arrow to the right of the diagnosis box to select the disease (this makes it show up on the right side). There might be times that you want to type in a text box. Be aware that you will need to choose a particular already populated answer for it to open up the text box.
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You will be asked to choose your preferred method of enrollment. Participants who select “online questionnaire” will then create a password and security question. (If you choose postal / mail-based, you will receive a paper-based form in the mail within about 10 business days). You do not need to continue reading below if you choose the paper version.
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Once you are logged into the Sanford participant portal, click the green button that says: "Continue Enrollment".
Note: for future logins, this green button will say “Update Questionnaire”.
Tips to register for the survey:
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Each page will be automatically saved when you move onto the next. You can always go back to a previous page. We encourage you to try to complete the questionnaire in one sitting. However, if you cannot, there is no need to worry.
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Be sure to leave questions that are not relevant to you blank. If you did not have your hypnic jerking condition “diagnosed” from a doctor or practitioner, select N/A in that particular survey question (this does not refer to the initial questionnaire/registration diagnosis box).
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Similarly, after being asked how and where your diagnosis occurred, you can choose the option “other” and in the dialogue box write text (for example, “there is no diagnostic test for hypnic jerking”) or something similar.
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Please try to fill in all the questions you have answers to, even if they don’t seem important to you. We will get the full benefit of the study when all questions are answered. We simply do not know what questions will reveal patterns in the case of hypnic jerking.
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The survey might take up to an hour of your time. If you have any trouble or questions, please note that details can also be found on Sanford’s website along with tutorials:
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For direct contact, please reach out to Ben Forred or Alyssa Mendel with questions or issues at cords@sanfordhealth.org or call them at 1-877-658-9192 (toll free) or 605-312-6465 (8:30-5:00PM CST). You can leave a message and they will do their best to get back to you within 1-2 business days.
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MAKE YOUR SURVEY VIEWABLE:
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On page 3 of the survey (see picture below), please make sure to fill out the first question asked. It reads: “I give permission to Sanford CoRDS to provide info that may or may not be identifiable to the patient advocacy group”.
Survey, Page 3
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On the video interview of us with Sanford CoRDS above, we explain why this is important and how your identifying details are hidden. In short, we (as patients) would like to be able to graph the results so we can show doctors or researchers.
Preview the Hypnic Jerking Survey
Please remember that your data can only be entered by going to the Sanford website or by calling Sanford to register and request to get a paper version sent to you.
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Thank you for your participation!
