Here’s How People with IH (and Their Supporters) Can Participate in Ground-breaking Research!

Dizzy? Having troubles with your bowels or bladder? Body temperature up? Blood pressure down? Heart rate up AND down? Any of this could be related to your IH. Whether or not you have these symptoms, you can help researchers, right now, to better understand these connections. Your data in the Hypersomnia Foundation’s Registry at CoRDS (Coordination of Rare Diseases at Sanford) is already making a difference! Because of you, we now have nearly 1000 participants in our registry, which means researchers can now rely on the Hypersomnia Foundation to help ensure they will have excellent patient participation when they submit new research protocols.

If you haven’t already enrolled in CoRDS, click HERE to join us now. If you’ve already enrolled, THANK YOU! – But please LOGIN now to ensure you’ve completed your questionnaire and check when you enrolled. If it’s been more than a year, if you’ve recently turned 18, or if your medical history has changed significantly, it’s time to update your data. And please mark your calendar so you remember to update your data yearly! Updates are easy, and should take only 10-15 minutes.

Because of your efforts with respect to our CoRDS registry, we’re able to make two very exciting announcements now. First, the chair of our Medical Advisory Board, Dr. Lynn Marie Trotti, will be presenting the results of the first analysis of our CoRDS data at the Hypersomnia Foundation conference this June 2-3, as well as at the APSS SLEEP meeting for sleep medicine professionals. Mark your calendars to join us in Baltimore at the Hypersomnia Foundation conference! Get more information and register HERE.

Second, Dr. Trotti and her co-author, Dr. Mitchell Miglis of Stanford, have leveraged the power of our CoRDS database and submitted a new research protocol to study autonomic dysfunction in people with IH. (Autonomic dysfunction occurs when the autonomic nervous system (ANS) does not work properly. The ANS controls several basic functions, including blood pressure, heart rate, body temperature, breathing rate, digestion, skin sensation, bladder, and sweat function.)

Now that this exciting research protocol has been approved, we need your help! We need all people with IH (and their loved ones who are not blood relatives) to participate in the survey, which will help increase understanding of the neurological aspects of IH. The researchers hope to present their results next year at the sleep research meetings (World Sleep and APSS).

Survey Closed as of Sept 2018. For results, CLICK HERE.

Below are the key points of the study protocol:

Background and Purpose:
Patients with idiopathic hypersomnia (IH) often report symptoms consistent with impairment of autonomic functions. This may be related to the underlying cause of idiopathic hypersomnia. The cell populations of the sleep/wake systems and the central autonomic network are in close neuroanatomical proximity, and we postulate that IH may reflect a disease that affects both of these systems. We believe that autonomic impairment is actually quite common in IH.
This study’s aim is to evaluate the connection between IH and the autonomic nervous system. In this initial study, we will administer electronic surveys with questions related to autonomic function and other sleep-related symptoms. To control for normal variation in autonomic symptoms among patients of a similar age, we will recruit the supporters of patients to complete the same surveys.

We hope to learn if there is an increased frequency of autonomic symptoms in patients with IH. Formally establishing this would provide insight into the potential cause of IH and would provide incentive for further studies testing for objective autonomic impairment in such patients.

Inclusion Criteria:
1. Adults at least 18 years old (patients and controls)
2. Clinically diagnosed idiopathic hypersomnia (patients)

Exclusion Criteria:
1. Previously diagnosed autonomic disease or hypersomnia (controls)
2. Untreated obstructive sleep apnea (patients and controls)

Survey will be sent to patients in our clinic with IH, along with patients through the Hypersomnia Foundation and its CoRDS registry. Consent will be performed electronically through an online consent form. IH patients’ supporters (other than blood relatives) will be asked to participate as controls. Additional controls will include current sleep medicine trainees and their family members.

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