Primary Care Physicians should have the knowledge and tools about clinical trials and research to advise a patient with Alzheimer's or a family history of Alzheimer's. At one time I was interested in getting genetically tested, but my doctor was not encouraging the idea.
Building Relationships with Local Communities
Goal: To increase recruitment and retention of participants into Alzheimer’s and dementia research at the local level, focusing on inclusivity and diversity in age, race, ethnicity, sex, education, income, urban-rural demographics, and cognitive status (asymptomatic, MCI, AD and related dementias).
Ideas in this area might address:
- Planning for diversity and inclusion
- Building and sustaining relationships with community partners
- Community collaboration on research design
- Study design to facilitate participation
- Overcoming barriers
- Systems and infrastructure to support inclusive outreach
- Role of funders, organizations, policymakers in implementing
Provide monetary incentives to neurologists and specialists who refer patients to a clinical trial. If sponsors monetarily incentivize neurologists, and get the word out to community specialists near trial sites conducting AD trials, to increase trial referrals from their practice, thereby fastening recruitment.
For middle-aged and elderly there are logistics/time demands that might make participation a low priority. BUT for the younger generation concerned about their parents and grandparents they might be a helpful beacon for awareness raising activities such as: visiting local elderly homes/communities/events; creating and distributing outreach campaign materials; making trial participation "cool" via stickers/buttons that ...more »
My husband and I have retired to Alcona County in rural northeast Michigan. The population in this county is the 7th oldest in the U.S. but we have such poor medical resources that very little is going on in the way of clinical trials. I am a retired BSN from U of M and personally know there are many retirees here who would gladly participate in research dealing with aging by filling out lifestyle surveys, diet diaries, ...more »
As a care giver to my husband, who has volunteered for multiple PPA studies, I would need to feel that their is some benefit to either my husband or to me as a caregiver, on donating more time. I am not talking about money, I am suggesting that if we could take away some useful information from participating then I would be more likely to sign him up. many caregiver feel lost, and an exchange of useful information ...more »
My mom was in a Memory care facility for 3 years and I didn't have any connections to research, best practices, etc. I think that supplying a handout to family members and the option to be added to a data base when the patient is admitted to these facilities would be beneficial for all concerned.
Trial match can partner with Alzheimer and LBD associations to create a listing of caregiver groups for Doctors and Facilities So to help caregivers find help. This will also assist in recruiting candidates for studies by increasing awareness. Providing speakers to these caregiver groups would enhance the effect. I include LBD because of the misdiagnosis of LBD as AD with terrible consequences.
There is famous and there is famous to the local community. Since all recruitment is local, meaning you have to go to a clinical site to enroll in a trial, the local community is the group of people who understand that your site is famous in Alzheimer's research. And famous to the local community is precisely the goal of just about all recruitment now. You don't need to be Harvard or Yale. You don't even need to have ...more »
The VA provides 1741 domestic medical facilities with some degree of mental health and/or primary care provided to veterans and qualifying family members. Eight conditions are targeted in Mental Health, but not Alzheimer's. However, screening for dementia is offered, so could be a tapped as a source of recruitment for research. A cursory review of the attached report appears to include any efforts aimed at a large population ...more »
True commitment to engaging, recruiting and retaining members of minority or underrepresented populations in Alzheimer's research, could be demonstrated by ensuring that clinical investigators,"steering committees"and research teams are consistently representative. Strategies that have proven successful, though perhaps more labor and cost intensive, should be promoted. Building enduring relationships in minority communities ...more »
Local non profit organization have strong existing relationships with people at every stage of the disease as well as the "worried well." As trusted sources of information and support, these organizations are well suited to provide information and referral but do not always have the capacity. Partnerships with trial providers wherein the non profit hosts community educational events and experiences, designed to be ...more »
Approach Bill and Melinda Gates to chair a working group on building community. They have pledged money towards research. They have the expertise of reaching out as shown by their work in other cultures, where they have gone village to village to set up programs and networks of support.
In urban areas where diverse non-English speakers are more plentiful, enlist the help of caregivers with such skills to better explain and enroll potential study subjects. The caregiver perspective is unique and can best anticipate and explain the questions that prospective subjects and their caregivers have. Combined with their non-English language skills, the study has a better chance of enrolling more diverse subjects. ...more »
Expand awareness to the Hispanic Community so they can benefit from programs and participate in intervention programs. This will overall benefit the state.
Offer participants financial incentive of a "scholarship" equal to one month of fee at facility and/or finance a weekend respite for caregivers. Also, consider involving a whole corporation that has multiple sites of memory care facilities. Have the corporation provide participants from their patient population -- again with individual financial incentive for the patient/patient's family. The corporation could use ...more »