Goal: Empower people from diverse communities -- those with Alzheimer’s disease and related dementias, their families and caregivers, healthy adults, clinicians, businesses, workers, and the general public -- to participate in research.
Ideas in this area might address:
- What messages and education about clinical studies and research participation are needed to engage a variety of audiences
- Where it would be helpful to deliver messages and education
- How to best connect/match participants with research
- How to better use technology and social media to facilitate participation
- How to engage health care professionals to inform patients about research participation
- Role of funders, organizations, policymakers in implementing
2) Engage the Centers for Medicare and Medicaid Services (CMS) as a partner, examining such approaches as including clinical studies participation opportunities as part of the Star Rating... more »
In contrast, the public has immense interest in these areas e.g. see huge following of Dr. Oz, Dr. Perlmutter, etc.... more »
Leverage physician communities on social media to provide regular updates to clinicians and inform them about their patients’ involvement in research studies.
Create and maintain a database of Alzheimer's patients and their family members. This will enable researchers to not only contact family with important research results but also to have the ability to follow this disease on a massive scale. Then maybe scientists and researchers will have a better opportunity to find trial participants with documented genetic links to this disease.
Bring together the leadership of registries to assess and devise a plan to link registries for the benefit of all. In addition to optimizing infrastructure and collaboration, examine how national outreach could support increased registry-based recruitment to trials.
Develop interventions, resources, and support programs and campaigns to improve recruitment and retention, based on knowledge of social norms and effective incentives for various audiences.
I see and hear them when they first come in. Mom's minister called me and it was happening in his family and his own kids would not go to visit... more »
Recruit a celebrity to complete a Trial Match Profile and use a slogan of "I Did It - You Can Too!" This will create interest and especially drive home the point that you do NOT have to have Alzheimer's or be of a certain age in order to participate in Trial Match