You’ve participated, and NOW THERE ARE RESULTS! Our hypersomnia-specific patient registry, which was established at CoRDS (Coordination for Rare Diseases at Sanford) in 2016 and which has grown to nearly 1,500 participants, has already helped researchers in their efforts to unlock the mysteries of rare sleep disorders. And your participation in other HF-promoted research studies has also yielded results!
Our HF website keeps track of both (1) the registry’s growth and (2) research studies which are utilizing the patient data from the registry. CLICK HERE to see both!
For example, in April 2018, a group of researchers (including Drs. Trotti, Ong and Plante of our Medical Advisory Board) published an abstract in SLEEP, which utilized data from our patient registry. Relying on this data, the researchers concluded that the incidence of sleep inertia was more widespread in people with IH than in people with NT1. The researchers also found that there was somewhat more overlap of symptoms between people with IH and people with NT2, which implied that biomarkers should be more similar between these two diagnostic groups, rather than when compared to NT1.
If you haven’t enrolled in the patient registry yet, please consider doing so TODAY! The registry is for people who have been diagnosed with idiopathic hypersomnia, Kleine-Levin syndrome, narcolepsy, or hypersomnia associated with certain other conditions. By sharing information about your symptoms, your previous treatments, and your diagnostic journey, you can help researchers better understand hypersomnias, which can lead to the development of better treatments and, hopefully, a cure someday.
And if you’ve already joined the patient registry, thanks! But be sure to update your information at least yearly, because it’s vital that researchers have long-term patient data. (If it is time for you to update your information, just click HERE.)