Enhancing Study Site Capacity

Enhancing Study Site Capacity

What do study sites need to be able to reach and enroll more and diverse participants?

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

(@natlefforts)

Enhancing Study Site Capacity

Work with primary care practices

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.

Voting

45 votes
(@jal4jyl)

Enhancing Study Site Capacity

Use Technology to Allow in-Home Study Participation

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 »

Voting

34 votes
(@capacitygrp)

Enhancing Study Site Capacity

Recruit and retain skilled and engaged staff

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 »

Voting

29 votes
(@localdiversegrp)

Enhancing Study Site Capacity

Develop community engagement outreach plans as a supplement to recruitment/retention plans

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 »

Voting

27 votes

Enhancing Study Site Capacity

Problems with recruiting and keeping participants in ALZ trials

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 »

Voting

14 votes
(@capacitygrp)

Enhancing Study Site Capacity

Pre-identify potential participants

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).

Voting

17 votes
(@nancymiller)

Enhancing Study Site Capacity

Provide LOCAL interest groups via Health Care Organizations

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.

Voting

12 votes
(@capacitygrp)

Enhancing Study Site Capacity

Create research-ready communities by enabling sites to serve as community resources for cognitive health.

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.

Voting

12 votes