BDSRA is excited to announce a number of opportunities for families to participate in research at the 2018 Family Conference! To learn more or to sign up for any of these efforts visit the scientific registration tables near the main registration desk.
Katya Herman, Chiltern Music Therapy
What: Short video interviews
Why: To add to Chiltern Music Therapy research on how music therapy improves quality of life for Batten patients, Katya would like to interview families who have experience with music therapy.
Who can participate: All families
Children's Hospital of Orange County (CHOC)
What: Blood Spot Card Collection
Why: CHOC is collecting blood spot cards from all individuals affected by Batten disease to advance scientific research and newborn screening efforts.
Who can participate: All individuals affected by Batten disease
Melissa Feuerborn, University of Kansas School of Medicine
What: Online survey with follow up personal interviews
Why: Melissa is conducting a resource assessment by interviewing families to better understand their medical and social needs. This assessment will help identify gaps in care and ways the Batten community can better serve families.
Who can participate: All families
National Institutes of Health (NIH)
W
hat: Families can learn about the initiative and get more information
Why: To identify clinical or biochemical markers that can be used as therapeutic outcome measures for CLN3, evaluate clinical aspects of CLN3 to provide tools for future therapeutic trials, and establish a biorepository of samples from well-characterized CLN3 patients for future research related to CLN3.
Who can participate: Patients with CLN3
U
niversity of Rochester Batten Center
What: Batten Natural History, Neuropsychological Testing, Contact Registry, Medical Records Study, EEG
Why: University of Rochester Batten Center is collecting information from all individuals affected by Batten disease for a natural history registry. The registry is a foundational tool that advances research in all forms of the disease.
Who can participate: All individuals affected by Batten disease