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New strategy aims to enhance recruitment for Alzheimer’s disease clinical studies

Dr. Marie Bernard
Marie BERNARD,
Deputy Director,
Office of the Director (OD)
.
Eliezer Masliah
Eliezer MASLIAH,
Director,
Division of Neuroscience (DN)
.

We’ve seen substantial expansion of our understanding of Alzheimer’s disease and related dementias in recent years. But we still have a long road to travel. One of the biggest hurdles in our path is recruitment and retention of participants in clinical studies for Alzheimer’s disease and other dementias.

Finding older people to volunteer for any clinical study is challenging. Finding volunteers for clinical studies of Alzheimer’s and dementia involves some substantial and unique issues. These can include strict eligibility requirements, invasive and time-consuming procedures, the need for study participants with dementia to have a study partner who can accompany them to appointments, the need to encourage people without symptoms to participate, and the inclusion of a wide range of participants from diverse backgrounds, ethnicities, and locations.

We have a plan!

That’s why we’re pleased to announce that NIA released the National Strategy for Recruitment and Participation in Alzheimer’s and Related Dementias Research on Friday, October 19, at the meeting of the Advisory Council on Alzheimer’s Research, Care, and Services. This strategy represents a years-long effort led by NIA, with facilitation by the Alzheimer’s Association and several other organizations, to address the challenges of recruiting and retaining participation in Alzheimer’s and related dementias clinical studies.

The strategy outlines practical, proactive approaches to help dementia study sites engage a wider, more diverse group of volunteers. Specifically, the strategy focuses on four large themes:

  1. Increase awareness and engagement at a broad, national level
  2. Build and improve capacity and infrastructure at the study site level
  3. Engage local communities and support participants
  4. Develop an applied science of recruitment

We’d like to thank the many stakeholders—from organizations to researchers to former and current study participants—who provided time, expertise, and critical feedback to help shape the national strategy, which now sets a path forward to address the many barriers to recruitment and retention. We owe a special thank you to our co-facilitators at the Alzheimer’s Association, members of the strategy steering committee, and our tireless working groups. The list of contributors can be found online.

Beyond releasing the national strategy

We view the release of the strategy as another mile-marker on the road to enhancing recruitment and retention for dementia clinical studies. We now turn our focus toward implementation and how the broad research community can work together to continue the momentum started with the development of the strategy.

NIA already has several projects underway to address recruitment and retention. The Alzheimer’s Clinical Trials Consortium is focusing on recruitment, including establishment of a new minority outreach and recruitment team. This team will use evidence-based strategies to support both central and local partnerships with diverse communities. We recently released a new funding opportunity announcement (FOA), PAR-18-749: Examining Diversity, Recruitment and Retention in Aging Research, designed to support development of the science of recruitment. This FOA will provide funding to teams comprised of researchers and community partnerships. The goal is to develop an infrastructure that can generate new processes, engagement practices, and communications strategies to improve and enhance diverse recruitment and retention in clinical studies.

Increasing awareness about the national strategy and the need for enhanced recruitment efforts will continue to be vitally important. Following the launch of the national strategy and to amplify the need for diversity in clinical studies, NIH hosted #ResearchDiversity Day on Tuesday, October 23. The day-long Twitter event featured strategies for enhancing diversity in clinical trials and studies and celebrated diversity in the research workforce. Throughout the day, nearly two dozen videos from researchers in the field were shared and messages about the need for diversity in research reached 1,400 users. You can read the lively and energetic conversation online.

We’re all in this together

These activities represent crucial next steps in solving the complex recruitment and retention puzzle. And we have only just begun. We encourage you to read the strategy and think about how you may contribute to these important efforts. It will take the broad community—working together—to move Alzheimer’s and related dementias research forward.

Alzheimer's Disease Clinical Research

Comments

Submitted by Judy Turner on October 31, 2018

Please provide details of dates and locations when available. My husband and I are both 68 years. He has been diagnosed with mild cognitive impairment, dementia.

Submitted by dave Hees on October 31, 2018

would like to help.....if possible

Submitted by Carolyn Dujon … on November 14, 2018

May I suggest finding ways to appeal to the family/caregivers of the persons with Alzheimer's disease as they most likely have to be equally involved at some levels.

There is a pamphlet the NIH created to address this issue. Here is the link:

https://order.nia.nih.gov/publication/caring-for-a-person-with-alzheime…

Most clinical trials now make it mandatory for the patient to have a "Study Buddy", which is typically the primary caregiver (spouse, friend) and information is given in detail when the patient and the Study Buddy enroll in a trial, and when the Informed Consent is signed. You do make a great point, thankfully there are resources for the families and loved ones of the person with AD that are available now that are relatively new (sometimes they may be difficult to locate). You can always contact your local Alzheimer's Association chapter (e.g., in San Diego it would be Alzheimer's San Diego, or ALZSD) and they provide information and many different ways of supporting the family during the stressful and difficult time while caring for a loved one diagnosed with AD. I hope everyone would have access to this information, but there is a concerted effort to make it easier to locate this information.

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