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BDSRA 2013 Conference UPDATES!
06/11/2013
BDSRA’s annual conference in Nashville is just around the corner! We can’t wait to see you for “Notes of Hope.”
Join us July 18-21 at the Nashville Airport Marriott. Click here for conference details.
Here are a few conference reminders and updates, including the latest conference program (click here):
♦ Please remember that all meals, t-shirts and extra outings must be reserved and paid for by June 25.
♦ If you have not received a confirmation e-mail for your completed conference registration, please notify Lisa Weston at lisaweston@bdsra.org or 800/448-4570, ext. 12. In order for your registration to be completed and confirmed, all costs need to be paid online by June 25. To register, click here.
♦ Meal tickets for each meal are required. A separate ticket will be included in your registration packet for each meal purchased for you and/or each of your family members.
♦ BDSRA’s negotiated rate of $105 (plus tax) per night at the Nashville Airport Marriott is offered until June 25. To make reservations, click here. Room availability and rates are not guaranteed after this date.
If you have any questions or concerns, please do not hesitate to contact Lisa Weston at the e-mail or phone number noted above. We look forward to seeing you in “Music City” July 18-21!
BDSRA Practice Guideline RFP Open until September 1, 2013
04/01/2013Practice 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 (mfrazier@bdsra.org) 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.
- BDSRA RFP 2013
- BDSRA Grant Application 2013
- BDSRA Reviewer Critique Form 2013
- BDSRA Reviewer Instructions 2013
- BDSRA FAQs 2013
- BDSRA DrX Sample Contract 2013
$1M in Batten Disease Research Funding Awarded through BDSRA Research Funding Collaborative
03/15/2013$1M in Batten Disease Research Funding Awarded
BDSRA Has Moved!
01/10/2013The new BDSRA offices opened January 3, 2013. Our fresh new space provides many great opportunities to partner with local universities and research centers. Just five minutes from Downtown Columbus, we look forward to taking advantage of the many resources it has to offer. Some office construction is still underway, but we are fully operational. Our new address is 1175 Dublin Road, Columbus, OH 43215; our current toll-free number remains (800) 448-4570. Come visit us some time!