Endocrine Abstracts

Introduction: Patients with complex health care needs and severely limited communication and mobility may be less likely to participate in research studies, and may find continued participation in such studies challenging. Allan Herndon Dudley syndrome (AHDS), due to defective thyroid hormone transporter (MCT8), causes severe neurological and physical disability. A multicentre trial (the TRIAC trial) studying the efficacy of the thyroid hormone analogue TRIAC in this rare condition has just been completed.

Method: Ten males with AHDS were recruited to the only UK site of the TRIAC trial (Cambridge). We conducted a participant survey in order to assess their experience of taking part in research.

Results: Response rate was 80% (1 died, 1 lost to follow up). Experiences of trial enrolment were positive: 87.5% strongly agreed they had sufficient time at the initial contact to discuss the trial and 75% strongly agreed that the pre-enrolment questions adequately covered relevant information prior to the first study visit. The research environment was highly rated; 100% strongly agreed that the room was appropriate, 87.5% agreed that parking was easy, 100% strongly agreed that appointments were arranged at convenient times. Care received was also highly rated; 100% strongly agreed that staff were attentive to the needs of the participant, 100% strongly agreed that staff explained each test and investigation in a way that they were able to understand, 100% strongly agreed that they could contact the Research team when needed. 75% said they would now be more likely to take part in research in the future. 62.5% stated that they learned more about their child’s condition.

Conclusion: It is possible to conduct research on vulnerable populations if infrastructure and staff experience are appropriate to the participants needs. Research participation can be a beneficial experience and can encourage patients to engage in further research.