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Mar 27, 2018

Awareness of Ground Breaking Research for IH

Awareness of critical research
Awareness of critical research

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. 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, join us now or 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 the efforts of the hypersomnia community, 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! 

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 persons 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).

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)

Protocol:
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.

Links:

Dec 27, 2017

Idiopathic Hypersomnia at World Sleep Congress

Dr. Arnulf - Chairs symposium at the WSC
Dr. Arnulf - Chairs symposium at the WSC

The Hypersomnia Foundation (HF) attended the World Sleep Congress (WSC) in Prague this past October and hosted a nonprofit booth at the exihibit hall.  Board members Diane Powell and Catherine Page-Rye attended and represented the HF and the hypersomnia community.  "We believe it is important to take this opportunity to increase awareness of IH at this important global meeting of sleep professionals," said Diane Powell, Chairwoman of the HF's Board of DIrectors.  The WSC is well attended by world clinical and scientific sleep medicine experts. 

Prague

 

At the HF's exhibition booth printed materials about the work of the Hypersomnia Foundation, information about the hypersomnia specific registry at CoRDS, and more was handed out.  Also, the HF's developing grants program that will financially support innovative research applications that are most likely to positively impact the hypersomnia community was discussed with many visitors.

Why did the Hypersomnia Foundation attending the WSC?

“This historic meeting in Prague brings together for the first time the best of sleep medicine with individuals from remote and populated parts of the world and members of major sleep societies.” (Dr. Richard Allen)

Part of the Hypersomnia Foundation’s mission is to build greater awareness of idiopathic hypersomnia by increasing awareness among clinical and basic science researchers. As a gathering of sleep medicine professionals from around the globe, this meeting was a fantastic opportunity for HF to focus on this part of the HF's mission.

Two physicians from the Hypersomnia Foundation’s medical and scientific advisory boards attended the WSC and participated in  a symposium: “Idiopathic hypersomnia: a neglected disorder.” This symposium comprehensively reviewed the latest advances in understanding, diagnosing and treating idiopathic hypersomnia, derived from large series of patients studied in tertiary referral centers.

Isabelle Arnulf, MD, member of the HF Medical Advisory Board (MAB) chaired this symposium and David Rye, MD, PhD, Chair of the HF Scientific Advisory Board (SAB), presented "New Insights into the Mechanisims of Hypersomnia."

In addition, Dr. Rye presented a course touching on aspects of sleep medicine and research that included a discussion of IH.   As Dr. Rye described, “This course integrated research and clinical practice, bringing together basic science and clinical advances, putting together the best of a ‘year in review’ and a ‘basic science/methods’ update for sleep physicians.” 
The formal announcement of the HF's grants program to the scientific community will depend upon having funds in hand sufficient to attract the best science as well as sustain this initiative. We continue raising funds to insure a vibrant funded research program.
Visitors at the HF booth at WSC
Visitors at the HF booth at WSC
Dr Rye presents during hypersomnia symposium- WSC
Dr Rye presents during hypersomnia symposium- WSC
Hypersomnia symposium at the WSC
Hypersomnia symposium at the WSC
Sep 27, 2017

Developing a solid foundation for a research program

Dr. Rye raises IH awareness
Dr. Rye raises IH awareness


The Hypersomnis Foundation's (HF) Medical and Scientific Advisory Boards, otherwise known as the MAB and SAB, are comprised of world experts in their fields of sleep research and clinical work. Questions for the Hf's CoRDS (Coordination of Rare Diseases at Sanford) hypersomnia registry were shaped by the knowledge of these groups, who advised HF on the kinds of information researchers of hypersomnia would find most helpful.  

As of today over 664 people with IH and related disorders have contributed their data to the HF patient registry at CoRDS - data that is vital to research. Your donations to HF help to grow and get the word out about the patient registry and the research program being developed.

Based in Europe and the U.S., the clinical and scientific physicians who comprise the HF's MAB and SAB generously write and vet articles for the SomnusNooze, present at national and internations HF conferences about hypersomnia, advise the HF Board, alerting us to the latest in research, clinical trials, treatments and diagnostics relating to hypersomnia.

We are extremely proud to have the advice of such a distinguished group of professionals.  the Boards are chaired by Dr. Lynn Marie Trotti (MAB) and Dr. David Rye (SAB), and we encourage you to take a moment to read about them and the rest of the MAB/SAB Board members in the "about us" section of our website: www.hypersomniafoundation.org

Dr. Rye presents at a sleep conference
Dr. Rye presents at a sleep conference
Getting the word out about patient registry
Getting the word out about patient registry
Dr. Trotti at #HFconf
Dr. Trotti at #HFconf

Links:

 
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