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?
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
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.
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 »
• 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.
Incentivise participation in a nationwide campaign research study (involving all forms of national, regional and local media) by offering the most researched and science based lifestyle programs to potentially thwart the disease. Provide participants with in-depth, diverse, whole body health knowledge as part of study participation agreement. Engage community involvement, i.e. churches, community organizations, health ...more »
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 »
Clinical Translational Science Awards (CTSA;s) have created robust infrastructures to run clinical studies at major Health Care Centers. They have patients and personnel, but limited funding for targeted studies unless supported by a commercial interest. Many studies of nutriceuticals, or complementary agents have been done, but very seldom with adequate numbers to get a well-powered outcome. I suggest that care givers ...more »
Respond promptly (within 1-2 business days) to inquiries or contacts from potential recruits. If necessary, the first response can be just an acknowledgement of the inquiry, but within no more than one week, the potential recruit should be screened and have an opportunity to ask questions.
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 »
At the site, develop a mechanism to support person(s) to lead planning, networking, implementation, and evaluation of strategies and tactics, potentially a stand-alone add-on module (to a traditional R01) that would fund an Outreach Specialist, the %FTE to be determined by the proposed scope of work. Module would require annual status report and metrics of success for renewal of NIH funds, which would emphasize successful, ...more »
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).
Develop/utilize a centralized expert ‘Navigator’ team to assist sites to adapt and implement the Alzheimer's recruitment strategies; The Navigator ‘hub’ of experts could be supported through joint funds provided by NIA, Alzheimer’s Association, ACTC, and site budgets.
Consider collaborating with existing registry programs or creating local registries to find potential volunteers. Incorporate trial-ready cohort programs, such as TRC-PAD and EPAD, into the screening model as a method of high-efficiency enrollment.
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.
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.