on Hypnic Jerking
Sanford Research agreed to partner with the hypnic jerking patient community in June of 2018 to help bring attention to the condition. On the accompanying pages, you can view our study questionnaire, preliminary study results, a short video we put together with FB group members and Sanford (re: confidentiality and other FAQ's), tips on completing our study, and a direct link to the study website.
Our aim in pursuing this is to discover how to best address the intractable (relentless) version of the hypnic jerking experience. This partnering was the first step to putting us on a direct path to finding solutions.
Sanford is backed by grant funding to help advance poorly researched / poorly understood conditions through their CoRDS (Coordination of Rare Diseases) program. They helped our patient group create a confidential survey with the aid of their institutional review board. The CoRDS patient surveys (also called registries) are available for confidential viewing to researchers, institutions and doctors so they can see our pooled data and apply to help us.
CoRDS staff provide administrative support along with connections and exposure to the larger medical community. Sanford CoRDS is linked with large institutions such as hospitals, the NIH, and other research institutions.