Research Brief: Expanded Registry to Grow DIAN Population
Since the Dominantly Inherited Alzheimer Network (DIAN) was formed in the U.S., Australia, and the UK in 2008, word has been spreading among researchers and families in other countries that there is now an opportunity to participate in a research study specifically tailored to the needs of the far-flung families who are living with a dominantly inherited form of Alzheimer’s disease. Clinician-researchers who care for affected families but are not part of DIAN itself expressed interest, as did colleagues in non-English-speaking countries (see ARF related news story). Individual family members started looking for a way to enter DIAN by searching the Internet. In response, DIAN has created a formal Web portal for both family members and clinicians to learn more about DIAN and to find out if they are eligible to join either the network’s ongoing observational study or a future clinical trial, or both. The registry is hosted at Washington University, St. Louis, Missouri, DIAN’s coordinating site.
The registry is part of DIAN’s general expansion, said Randall Bateman of WashU. One additional site in Florida will be joining the existing sites this year. Translation of all DIAN materials—protocols, psychometrics, clinical assessments, informed consent, etc.—into Spanish and German is nearly finished. These will be important in two ways, Bateman noted. First, sites in Los Angeles, New York, and Florida have significant numbers of Hispanic patients and staff. Second, sites in Spain and Germany are in the process of setting up similar studies in those countries and will conduct the research in their native language. Increasing the relatively small number of participants—currently 240 enrolled in DIAN—will help increase the study’s power and flexibility in designing future treatment studies.
At the same time, there has long been talk that autosomal-dominant Alzheimer’s disease might not be quite so rare as is generally thought, based on the number of published cases (see ARF Mutations Directory). Once widely publicized, the expanded registry might be a tool for participants to join research studies and drug trials, and for otherwise isolated families to find and empower each other.
Since 2008, DIAN has been funded in large part by the National Institute on Aging. This week, the network’s Therapeutic Trials Unit (see ARF related news story) received a $4.2 million grant over four years from the Alzheimer’s Association, the largest individual research award the association has ever made. In Germany, the DIAN sites are funded by the recently founded German Center for Neurodegenerative Diseases (DZNE), headquartered in Bonn.—Gabrielle Strobel.
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