Participating in a clinical trial can mean that Rare Disease patients, and sometimes their families, must travel to attend study visits near or far. “Patient concierge” services aim to address some of the challenges participants encounter. These services include travel support, pre-paid debit cards, bookings & reservations support, and expense reimbursement. However, there is little research available on how people with rare diseases feel about travel support services or other concierge services they receive during their trial participation.
PRA’s Center for Rare Diseases (CRD) has partnered with Scout Clinical (Scout), the world’s leading provider of patient concierge services for clinical trials, to carry out research with rare disease patients and caregivers. This research includes several virtual focus groups, as well as surveys to explore their experiences, preferences and unmet needs.
For Scout, the aim of this research is to find ways to improve existing services and innovate to meet emerging needs for support. For the CRD, the aim of this research is to better understand what services participants need in order to inform Sponsors on the right support strategies for their rare disease trials. Both Scout and the CRD hope this research will amplify patient voices regarding how clinical research can better fit the lives of those affected by rare diseases.
This research is led by three CRD team members: Laura Iliescu, Manager of Patient Advocacy; Kendall Davis, Manager of Patient Advocacy; and Jana Benesh, Clinical Strategy Lead in collaboration with Scout Clinical team members, KimberLee Heidmann, Vice President, Patient Services and Jessica McKague, Executive Director, Business Strategy.
We are honored to be partnering with Scout Clinical to conduct this first-of-its-kind research, as both Scout and PRA share a deep dedication to advancing patient centricity in clinical research. Amplifying the patient voice to help shape the supportive services provided individuals making an incredible contribution by participating in clinical trials is one of the most important ways in which we can do this.
Laura Iliescu, Manager of Patient Advocacy & Engagement, PRA Health Sciences
“Participating in a clinical trial takes an enormous effort from patients, caregivers and families,” says PRA’s Kendall Davis, Manager of Patient Advocacy & Engagement. “It’s critical to the success of vital rare disease clinical trials that we continually seek ways to make participation easier. The only way to do that is by talking directly to patients. It is the only way to bring meaningful therapies to these patients as efficiently as possible."
“We are thankful to the PRA CRD team for their partnership on this important research initiative and for their assistance creating an avenue for patients and patient families to provide their perspective,” says Jessica McKague, Executive Director, Business Strategy at Scout Clinical. KimberLee Heidmann, Vice President, Patient Services at Scout Clinical adds “Understanding the unique challenges patients and patient families face enables Scout Clinical to continuously improve the clinical trial experience for patients.”
Research began in December 2020. The CRD and Scout plan to publish results in Q1 2021. A key factor of success in conducting this research is the CRD’s close connection to rare disease patient advocacy networks. This connection enables us to partner with the rare disease community to conduct this important research quickly and efficiently.
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