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.