For many years, the American Registry for Migraine Research (ARMR) has been enrolling participants to the migraine registry, where they have collected quantitative and qualitative data to drive change and improve the lives of migraineurs across the country. Currently, ARMR is looking to improve and increase the rates of follow-up and active participation with the ARMR participant online portal. This study aims to collect data involving the participants’ experience of ARMR enrollment, their thoughts when participating in the online portal and Daily Headache Diary, the influencing factors that engage them to participate in active follow-up, barriers to compliance, and what they believe the registry can do to help improve the patient’s overall experience. Participants were recruited from three ARMR sites across the United States. Data was collected via semi-structured phone interview, and data analysis was facilitated using NVivo software. Four main thematic categories resulted from the analysis: (1) experience, (2) resource use, (3) suggestions, and (4) utility. Among some of the responses were statements regarding a lack of information given to them during the enrollment process, barriers within the technology, lengthiness of surveys, no awareness of where to access information to answer their concerns about their migraines, and more. ARMR plans to utilize this data as suggestions to make changes within the platform to improve the patient experience and the registry.
D'Onofrio, Izabella; Frasso, PhD, MSc, CPH, Rosemary; and Quinn, MPH, Anna, "Participant Experiences with the American Registry for Migraine Research: A Qualitative Study" (2019). Master of Public Health Capstone Presentations. Presentation 303.