Year: 2024
Type: conference-abstract
Abstract: Background In the iMarkHD study, we aim to investigate changes in the binding profiles of four distinct molecular PET markers and various MRI markers across different disease stages in people with Huntington’s disease (PwHD), compared to healthy controls, with the aim to identify novel biomarkers for disease and symptom progression. Aims To provide an update on recruitment and study progression of the iMarkHD study. Methods We report the number of currently enrolled participants (figure 1) per group, and provide demographic data for these participants, number of participants and reasons for screen-fails, as well as participant feedback. Results Recruitment efforts have resulted in the enrolment of 64 participants with 17 participants (70.8% of target) in group B (HD-ISS 0/1 PwHD), 15 participants (62.5% of target) in group C (HD-ISS 1/2 PwHD), 13 participants (54.2% of target) in group D (HD-ISS 2–3 PwHD), and 19 healthy volunteers (52.8% of target) (figure 2). PwHD were successfully enrolled through 11 participant identification sites across the United Kingdom, providing a representative cohort of PwHD in terms of geographical distribution and demographics. We have had 13 screen fails, most commonly because of ineligible medication use, and 10 participants withdrew, mostly related to progression of their disease and travel distance. Strategies that have supported enrolment and retainment include covering travel and accommodation costs, and flexibility with dates for study visits. Participants have all rated their participation as very good or excellent. Conclusions In demanding observational studies, such as the iMarkHD study, appropriate recruitment and retainment strategies are crucial.
Authors: Alay Rangel Cristales, Monika Hartmann, Naomi H Martin, Orsolya Makos, James Badenoch, Jose Manuel Valera-Bermejo, Nikki Palasits, Andrew Wood, Steven Williams, Daniel J van Wamelen
Language: English
Subfield: Cellular and Molecular Neuroscience
Field: Neuroscience
Domain: Life Sciences
Open Access status: gold
OpenAlex ID: W4402374629