A collaborative effort is seeking nominations for people with dementia and their caregivers to participate in a panel that will engage with researchers in an attempt to improve the design of research and clinical trials. These research interventions could then, in turn, improve the lives of the patients and their loved ones.
The National Institute on Aging (NIA) IMbedded Pragmatic Alzheimer’s disease and AD Related Dementias Clinical Trials (IMPACT) Collaboratory and the Alzheimer’s Association are jointly organizing the “Lived Experience Panel” to provide feedback to researchers and discuss methods for studying non-medication interventions that can improve the quality of life of patients and their loved ones.
The Penn Memory Center (PMC) has been actively involved with IMPACT to support efforts to conduct pragmatic clinical trials of interventions with healthcare systems for those living with dementia and their caregivers. Drs. Jason Karlawish, co-director of PMC, and Emily Largent, a Christopher M. Clark scholar at PMC, lead the ethics and regulation core of the Collaboratory. Kristin Harkins, a PMC research program manager, serves as the project manager for the core.
All participants are requested to be committed to the panel for one year. Participation will include training regarding the goals of the Lived Experience Panel, four quarterly 90-minute meetings, review of pre-meeting materials, and evaluation of each meeting soon after it has completed.