Alzheimer's disease (AD) is increasingly recognized as one of the greatest public health concerns of the 21st century. Dominantly inherited AD (DIAD) is caused by specific genetic mutations with symptom onset in the 30s, 40s and 50s. Though this population represents less than 1% of all AD cases, DIAD is extremely valuable for advancing our understanding of the disease. Because DIAD mutation carriers are certain to develop dementia with a predictable age of onset, researchers can identify early signs and test preventative therapies that could help the 44 million people affected by AD globally. However, large scale observational studies and clinical trials in this population have only emerged in the last decade, and the studies are intensive, requiring an enormous commitment from participants. A dedicated mechanism to educate researchers, participants, pharma companies and regulators on DIAD research is currently an unmet need. In 2015, Washington University and the Alzheimer's Association organized the first international DIAD Family Conference to bring together leading researchers, regulatory agencies, pharmaceutical representatives and families with DIAD to summarize the state of the field and identify the best way forward in our goal of preventing AD (1-3; 2015 highlights video). The considerable success led to a call for this to be a recurrent event with the second DIAD Family Conference scheduled for July 23, 2016, in Toronto, Canada. To support this innovative scientific platform, the current proposal requests four years of funding which will be combined with pledged support from the Alzheimer's Association. Conference goals include offering a forum for interactive dialogue about research, trial design, drug development and other topics raised by AD researchers, DIAD families, regulatory agencies, pharmaceutical representatives and nonprofit organizations; uniting DIAD scientists and summarizing the state of research on DIAD; and informing and supporting families with and at risk of developing DIAD. To accomplish these specific aims, we have designed a full day conference focused on scientific content, practical information, support sessions and networking opportunities. A poster session, two breaks, lunch and reception offer opportunities for individual interactions among participants, scientists and presenters. As a result of these meetings, scientists will learn from each other, families will gain valuable information and support, regulators and pharma companies will have an opportunity to learn from patients, and retention and participation in research is likely to increase. Given the experience and expertise of the co-organizers, planning committee and speakers, past meeting success, pairing with the major AD conference AAIC, and the novel programming, we expect this recurring event to energize the AD community and provide a unique and valuable opportunity for these families and AD research as a whole.
The dominantly inherited AD (DIAD) population is uniquely positioned to help researchers understand disease progression and develop therapies to slow or prevent the onset of dementia for DIAD and the 44 million people affected by AD globally. Together with the Alzheimer's Association, Washington University proposes a series of international DIAD Family Conferences to summarize the state of the field and identify the best way forward in our goal of preventing AD. At these conferences, scientists will learn from each other, families will gain information and support, regulators and pharmaceutical companies will have an opportunity to hear from patients, and participation in research is expected to improve, providing a valuable opportunity for DIAD families and the field of AD research as a whole.
