Considerations for Professionals
Guide for Researchers Involving Participants Who Have Hypersomnias
Guide for Researchers Involving Participants Who Have Hypersomnias
Published February 22, 2022
Revised February 28, 2022
Vetted by Our Medical Advisory Board
This guide’s* purpose is to help researchers effectively recruit and retain participants for their studies, improve study design and validity of results, etc. A concomitant goal is to help reduce the burdens experienced by person(s) with hypersomnias (PWH) when they choose to participate in research studies, by ensuring staff and researchers appreciate the full range of PWH hardships, including financial stressors, that may be encountered during these studies and by providing suggestions to address them.
It is important for researchers working with PWH to be informed about the various hypersomnias and the evolving research in this arena (see IH Summary, About IH, About Related Sleep Disorders, and Classification of Hypersomnias). For example, differentiation among physical fatigue, mental fatigue, and sleepiness can improve diagnostic accuracy, understanding of the symptomatic burden, etc.
Many PWH have lost a good part of their lives to sleep and brain fog/cognitive impairment. Volunteering for a research study, which many of them have done, is a way of serving a humanitarian need. They sacrifice their family time, their income and more to provide this service.
* This guide was developed by the Hypersomnia Foundation and approved by its Medical Advisory Board, Board of Directors, and Patient Advisory and Advocacy Council (PAAC). It is based on suggestions from a focus group of patient-experts who have IH and NT2; the focus group was conducted in accordance with standard qualitative methods of research practice. For the purposes of this guide, PWH refers exclusively to those diagnosed with IH or NT2. It is important to note that the considerations presented do not necessarily apply equally to all people who have IH and NT2, and that they may also apply to people who have other hypersomnias, e.g., narcolepsy type 1 (NT1) and Kleine-Levin syndrome (KLS), as well as those yet-to-be-diagnosed with a hypersomnia.