Work with primary care practices to understand how best to provide guidance and support for research recruitment as an integrated activity within the office practice environment, without disrupting the flow of clinical care. Leverage existing point-of-care decision-support tools to identify potential research subjects and obtain permission from physicians to enroll their patients in research studies.
Enhancing Study Site Capacity
Goal: Create the capacity of study sites and research organizations to increase enrollment for an ever-growing portfolio of Alzheimer’s disease and related dementias studies.
Ideas in this area might address:
- Infrastructure investments needed to enhance capacity of sites to accommodate growing number of studies and participants
- Systems to improve recruitment efficiency
- Collaboration – with communities, other institutions and study sites, organizations and agencies
- Workforce diversity, training, and capacity
- Changes in culture or valuation of clinical research in organizations
- Effective use of registries
- Role of funders, organizations, policymakers in implementing
Many, if not most, folks have access to the internet and can provide their input electronically, provided the study is designed to allow use of multiple platforms and methods. As part of a clinical trial I've been asked to join some cognitive studies on-line. However, the software allows only for touchscreen and apparently doesn't support Mozilla Firefox. A study whose design incorporates a range of input capabilities ...more »
Build the cost of full-time recruitment staff or a team into grant application budgets. Hire at each site or cluster of sites a recruiter or recruitment team that includes backgrounds in public health marketing and outreach, as well as those with skills in recruiting families who are experiencing cognitive decline in a loved one. Support site-level efforts to retain experienced coordinators, raters, regulatory staff, ...more »
Create direct linkages among the research community, primary care practices, and targeted subspecialty care practices to share specific research opportunity updates.
Site recruitment proposals should include a community engagement outreach plan (separate from, but complementary to recruitment/retention plans) as part of the grant application process, which would list strategies to be implemented and an operationalized plan to do so (with an appropriate budget) that would span the life of the grant, with a focus on sustainability of partnerships for other future recruitment efforts. ...more »
Run multiple, complementary studies at a site so that screening efforts are not specific to one trial and can offer more than one research participation option for many volunteers, such as those at varying stages of disease.
• Marketing-use marketing strategies designed to reach communities were they are-buses, culture specific radio and television advertising.
• Get involved in communities, enlist the assistance of community leaders to develop strategies that will work in their community. Have the employees reflect the community population.
Explore the feasibility of placing amyloid PET scanners in optimal locations and returning results to local sites so investigators can pre-identify suitable candidates. Such an approach might also be applied to screenings and studies which require lumbar punctures. Devote resources to identifying people at risk earlier in the disease process (e.g., genetic, biomarker, clinical, demographic).
Partner with healthcare systems or insurers for research referral.
Establish a community screening center or offer a financial incentive to sites that can pre-screen for studies beyond their own investigations. Additional required informed consents should apply to all disease stages and trial interventions; locate such sites near principal investigator sites.
Why is it hard to recruit for Alzheimer's studies? There has been no positive track record in finding a cure. That's why. As a Generations Study participant, I spend time driving in traffic to my study site. I get prodded and poked, injected, and cognitively tested. I do not believe that I will benefit from this study, and I am not naturally altruistic. I signed on because I love my children and grandchildren. Some ...more »
I know of 6-7 trials happening in the Boise, ID area that are not on trialmatch. What is the process for adding trials to the database?
Identify and address the scientific, ethical, regulatory, and compliance challenges to implementing incentives and recruitment strategies for a given audience. A menu of agreed upon compensation and incentive opportunities could be developed as more is learned about these approaches.
Offer community programs not targeted specifically to research recruitment (e.g., brain health/fitness, cardiovascular/diabetes risk, and memory screening). Ensure that recruitment staff connect with families and potential participants before discussing research. Ensure when feasible that a budget and plan exist to expand a site’s capacity to serve the community as a resource.
Local health care organizations and groups can host 'experts' to share current research and information regarding dementia and Alzheimer's, inviting local residents and members. At those meetings, provide opportunity to become involved in/sign-up for studies, inclusive of details, locations, reimbursements, and objective.