BDSRA Practice Guideline RFP Open until September 1, 2013
Practice Guidelines for the management of Batten disease. BDSRA seeks to fund the development of practice guidelines for the diagnostic confirmation and management of individuals with Batten disease. Literature reviews, consensus statements created by a panel of international experts in clinical and laboratory diagnosis or treatment and management and endorsement from appropriate international professional societies such as the American Academy of Neurology, American Association of Neuroscience Nurses, etc. is required. These guidelines will serve as an educational resource for clinicians new to Batten disease. Therefore, it is expected that they will follow the Institute of Medicine’s Standards for Developing Trustworthy Clinical Practice Guidelines (http://www.iom.edu/Reports/2011/Clinical-Practice-Guidelines-We-Can-Trust/Standards.aspx) and be widely disseminated in the most appropriate form and forum. The authors will be provided with $5,000 to create practice guidelines based upon the current state of science and clinical care and $10,000 if their plans include the creation of an international working group dedicated to developing additional guidelines across multiple levels of care — seizure management, occupational therapy, nutrition etc.
Applicants must send an email request for consideration of their topic area by August 1, 2013 to Dr. Frazier (email@example.com) for approval before attaching a free-form grant application to administrative pages of the application form. Single issue and compendium practice guideline proposals will be due September 1, 2013.