Non-profit UsAgainstAlzheimer's is launching a precompetitive, public-private collaboration to include patient voices in decision-making processes across the life cycle of Alzheimer’s disease treatment.
The Alzheimer’s Disease Patient and Caregiver Engagement (AD PACE) initiative aims to identify and quantify patient needs and preferences and integrate them into clinical trial design, drug development, regulatory review, payer value models, coverage and payment determinations, and research on care and services.
AD PACE will gather patient experience data through its A-LIST online community, where over 6,000 patients and caregivers can participate in surveys and interviews. It is also developing the AD PACE Data Commons, a repository for de-identified data from preference studies conducted by non-profits, academic institutions and industry.
AD PACE members include pharmaceutical companies, advocacy organizations, academic institutions and care services companies. Its founding sponsors are Biogen Inc. (NASDAQ:BIIB), H. Lundbeck A/S (CSE:LUN), Otsuka Pharmaceutical Co. Ltd. (Tokyo, Japan), Leaders Engaged on Alzheimer's Disease (LEAD) and Home Instead Senior Care. Eli Lilly and Co. (NYSE:LLY) is a supporting sponsor.
Partners and academic advisors include the Dementia Action Alliance, Balm in Gilead, Alzheimer's Research U.K., the Critical Path for Alzheimer's, MyHealios and other academic researchers. NIH, FDA and CMS comprise AD PACE's federal advisors.