I am 53 and have younger onset Alzheimer's. I have been a participant in the Biogen Aducanumab clinical trial for 20 months. During that time I have had many conversations with my community of friends also living with younger onset Alzheimer's. There is tremendous value hearing a clinical trial story from people living with the disease and who are actively and joyfully participating in a clinical trial. I'm able to ...more »
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
1) Encourage healthcare systems and health insurance plans to use clinical trial awareness initiatives, evidence-based brain health resources and partnerships as an incentive and benefit for their beneficiaries/clients and subscribers. 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 »
Organizations like 23 and Me offer affordable genetic testing for late onset Alzheimer's. Due to family history, both my wife and I took these test due to family history. We also self reported a very extensive personal health and lifestyle history, helping to create a significant database of possible contributing factors to the emergence or progression of the disease. Our goals were to increase awareness so as to better ...more »
Continuing care communities would be a great place to focus an informational campaign on participation in research. I cant say that I have seen anything in my mothers community. In those communities there are people in all stages of mental capacities, and people who have friends at all stages. It seems like there is an opportunity for a culture shift to making participation in research more of the norm than the exception. ...more »
Many non-pharmacological interventions have theoretical justification and attractive but very limited clinical data suggesting benefit for cognition. Most of these are relatively safe. But, very little research in these areas get funded. So, that even very encouraging pilot studies rarely get replicated. 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.
Discuss with employers and employee leadership how participation in or support of participants in clinical studies can be encouraged by an organization’s policy, including providing paid time off for employees who might become study participants or study partners. Ensure protections against discrimination for employees if/when they participate in clinical studies or serve as study partners for age-related cognitive function, ...more »
Clinical trials are foreign to patients and caregivers. More education about the trials, what it means to be involved, privacy issues and ability to exit the trial at any time needs to be communicated more directly to the desired sample subjects. I am a volunteer Alzheimer's Association Community Educator. I always briefly discuss the trials and potential benefit of involvement. However, it is then left to the person ...more »
Anyone, who has experienced the insult of Alzheimers, firsthand, would rather hear from doctors on the front lines, than from anyone else for their loved one's care. Researchers could use surrogates on television to relay their trial ideas for possible Alzheimers prevention, treatment or screening opportunities. That would, at least, drive interest toward, current, trial opportunities, given the legitimacy. Researchers ...more »
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.
People are afraid of dementia. They don't know how to handle it. It also makes them feel like they don't want to see their loved ones in this condition. They don't understand it. No one tells anyone about it. We have a support group at the Assisted Living where Mom lives. 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 »
The need to find more qualified participants of all backgrounds and ages is critical to the outcome of any clinical trial. As noted elsewhere expense is an issue. Distance driving is a big stumbling block to participation. Our local senior center is a tremendous group of those who have cared for, currently care for or are experiencing a slow decline in cognitive skills. I am a former mental health counselor and I have ...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