Subject: Exciting update and screening results for the Vanda Non-24-Hour Studies in the Blind
As many of you know, Vanda has been conducting research on a sleep problem related to total blindness. We have received many questions asking for information about how the study is progressing and if it is working. In a press release on January 26, 2012, Vanda announced “tasimelteon was shown for the first time to reset the body clock and to align it to a constant 24-hour day in patients suffering from Non-24-Hour Disorder (Non-24-Hour).” In addition, we are pleased to be able to share some information from the screening stage of the 3201 study that you may find interesting. Examples of the results include the fact that over 70% of those who are totally blind with a sleep complaint were confirmed to have Non-24-Hour. In addition, 50% of patients experience an almost sleepless night (<2 hours of sleep) the equivalent of once per month. This data shows how severe the sleep problems can be in those who are affected and how common this condition is among individuals who have no light perception. We want to thank everyone again for the support and participation that makes this research possible and let you know Vanda has donated over $30,000 to various organizations chosen by participants in the survey. Please share this information with any friends, family or colleagues who may benefit from knowing about Non-24-Hour and encourage them to consider participating. We are close to completing enrollment but we need several more people at each of our 23 research sites across the US to complete the study. Working together, we can help bring a treatment for Non-24-Hour to those who need it. More details on the data are below and the study announcement with contact information is at the bottom of this message. --------------- Vanda has submitted abstracts to the annual scientific sleep meeting planned for June 2012 in Boston, MA. Below are highlights of some of the information that is planned for presentation at the sleep meeting. Vanda has completed over 1,000 surveys of totally blind, no light perception individuals. Over 75% of participants taking the survey report one or more of the following: trouble falling asleep, staying asleep, staying awake and/or difficulty with napping. For the 143 patients analyzed to date in the Non-24-Hour diagnosis stage of the study, 70% received a confirmed diagnosis of Non-24-Hour. The median amount of time patients’ body clock moved was over 3 hours per week, with some people moving more than one hour every day. During the screening and diagnosis part of the trial, sleep diary information highlighted some of the sleep problems caused by Non-24-Hour. Over 50% of individuals with a Non-24-Hour diagnosis have the equivalent of 1 night per month with almost no sleep (<2 hours) and almost 10% have the equivalent of 1 night per week with almost no sleep (<2 hours). In addition to the severe sleep problems, Non-24-Hour patients report daytime napping that comes and goes depending on where their body clock is relative to the normal day. This napping is increased only when their body clock is out of alignment with the normal day/night cycle and those with Non-24-Hour do not show increased napping at times when their body clock is aligned. For more information on clinical studies and to take the survey, call 888-389-7033, visit www.non24registry.com or Email [email protected]
_______________________________________________ ATI (Adaptive Technology Inc.) A special interest affiliate of the Missouri Council of the Blind http://moblind.org/membership/affiliates/adaptive_technology
