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HD InsightsFeatured Story: WANTED – Young Trial Participants

Ingredients for Recruitment and Retention

by Anna Pfalzer, PhD, Research Assistant Professor, Vanderbilt University

I have been able to observe clinical research studies from a unique vantage point. I was trained as a lab scientist, and have enjoyed beginning to work with patients and families as part of new clinical research into the underlying mechanisms of neurodevelopment and neurodegeneration in HD. Here are my observations regarding recruiting patients for a study where we observe how parents and their adolescent and young adult children communicate about HD.

Many HD studies are longitudinal and require annual follow-up visits of similar length. All this is to say that participation requires a significant investment of time and resources for families, and yet despite this, we have achieved a remarkable recruitment and retention rate in our center. Among the eligible participants approached, over 95% were interested and willing to participate in the study. Furthermore, 96% of eligible participants have returned for a follow-up visit.

I attribute our high retention rate to several factors: a clear established objective, an engaged multidisciplinary team, a commitment to improving quality of care, and flexibility.

The overarching goal of my research is to provide better care for our HD community and to really shift the framework from treating HD at the patient level, to recognizing that HD affects families and communities. Our approach to this goal is to begin assessing adolescents and young adults in families affected by HD and who are themselves at-risk for the disease.

Once our study objective is described to affected parents, the vast majority of them agree to participate on the spot, and very few of them even ask for details about the study itself. I can think of several instances where eligible parents responded with “Sure… just tell me what you need and when you need it.”

I think this really reflects parents’ desire to improve the lives of their children as well as the need for this type of work. It probably goes without saying that research trials which focus on improving the lives of children at-risk for an incurable disease have fewer problems with recruitment and retention than other medical conditions.

I also strongly believe that our unique team significantly contributes to our successful recruitment and high retention — especially considering we do not currently advertise on social media platforms. One particular strength is the multidisciplinary nature of our team, which integrates clinicians and basic researchers.

During a research study visit, we not only complete the necessary assessments, but our team addresses clinical care concerns which arise during study visits. It is not uncommon for our pediatric neurologist and social worker to spend additional time with families to address their concerns for their own health as well as the well-being of their children. These discussions lead to study participants receiving a variety of resources and often transitioning into some form of additional clinical care.

Furthermore, these conversations always receive follow-up communication from both our research and clinical team. Our high standard of care for our research participants establishes a supportive and collaborative relationship between our team and families, which really translates into excellent retention. In my own personal experience as a research subject, I have never seen a principal investigator or a clinician during my participation, let alone, received follow-up communications. Interestingly enough, our team just published a paper that said staff retention was higher when the PI frequently interacted with study staff and expressed interest in promoting staff career development. I would propose that similar relationships exist between study participants and study staff — that retention is better when the research team expresses a genuine interest in the well-being of the participant and their family.

We also often schedule research visits over weekends… and this requires flexibility not only by participants, but by the research team.

The last thing that really contributes to our high retention among our study participants is our flexibility as a team. We understand the time commitment to participate and the impact that has on working families. We are intentional about scheduling research visits around work, school and other medical appointments. For instance, we tailor research visits to coincide with clinic appointments to prevent having additional burdens on families for time off work or school absences or unnecessary travelling. We also often schedule research visits over weekends to prevent these same burdens and this requires flexibility not only by the participants, but by the research team.

Ultimately, I would say our success thus far can be largely attributed to active engagement by the lead investigators, collaboration amongst our research team and their tireless work to improve the lives of families impacted by HD. Above all, success depends on the committed families who continuously seek out opportunities to improve the well-being of their families and their loved ones.

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Our mission is to promote, disseminate, and facilitate research on Huntington’s disease. To fulfill this mission, we are guided by an outstanding editorial board that includes representatives from three continents, academia, industry, and the HD community.