As a Senior Clinical Research Coordinator with the Penn FTD Center for just over three years, I have had the pleasure of getting to work with a large portion of participants involved in our various observational research studies and clinical trials. A Clinical Research Coordinator (CRC) often acts as a guide for many participants, coordinating research to align with clinical care and becoming a primary point of contact on one’s care team. Many hours are spent in the screening and enrollment process for our research studies answering questions as they relate to one’s care and diagnosis and completing an Informed Consent when enrolling into our studies. Communication becomes frequent over the course of a few weeks to months. Due to this we often form meaningful relationships with our patients and their families.
Our team is often among the first line of communication and education for patients and families who are new to Frontotemporal Degeneration (FTD) diagnoses. After first meeting with a neurologist, communication between the patient and caregiver and the CRC begins and we often become your primary contact at the FTD Center. While recruiting for our multiple observational research studies and clinical trials, it becomes vital to act as a source of knowledge within the field. Taking the extra time to listen to patient’s goals, answer questions, and hear their concerns is extremely important as it allows us to learn how best to support our community. The relationship patients and families have with our center is one that is constantly evolving to meet individual’s needs for support and education.
There have been many occasions where my colleagues and I have spent hours on the phone with participants and/or caregivers to discuss the challenges of the daily experience of living with FTD, whether it be a personal experience or the experience of caring for someone who has been diagnosed. Sometimes these hours are spent validating the lived experience and answering questions as it relates to a new diagnosis, and other times they are spent just listening to offer our understanding. No matter the outcome of the call, it is always of utmost importance to our staff that our participants feel heard and cared for.
For participants involved in our observational research studies, our team has the pleasure of connecting with you on an annual basis from anywhere between 1-4 days to complete study activities. During the study activities at each visit, participants and their care partners are asked to complete a variety of questionnaires to assess their emotions, social interactions, cognitive functioning, and general day-to-day life. This is typically done as an interview with one of our staff members, which allows us to see the bigger picture of life with FTD.
In addition to learning more about FTD itself and educating one another, the relationship that forms between staff and participants begins to feel like a sort of friendship over time. We begin to hear about family events and dynamics, vacations, and shared memories between participants and their caregivers. By the time the next annual visit comes around, we are eager to make that connection again and hear of any updates. This connection has undoubtedly been one of the most rewarding aspects of being in a CRC position. The core of all the work we do is genuine connection, understanding, and patient-focused care.
~ Julia Kwiecinski, Senior Clinical Research Coordinator