Abstract
Objectives To examine the methods and infrastructure necessary to
establish a national Ménière’s disease registry Design Observational
study. Four NHS Trusts and four independent hospitals or clinics, within
three distinct urban and rural regions within the UK (“Blinded for
review”). Participants Patients with Ménière’s disease. Main outcome
measures Data related to the number of participants recruited, method of
recruitment, participant demographics, completeness of data, and
proportion of participants with bilateral disease. Results 411
participants were recruited into this study, 263 from NHS Trusts, and
148 from independent hospitals or clinics. Online recruitment was used
for 73% participants and 27% were recruited via paper. 57% of
participants were female and 96% of participants were white. There was
no clear advantage to data completeness from either online or postal
data collection. Around 20% of participants had audiological evidence
of bilateral Ménière’s disease. Conclusion This feasibility study has
demonstrated that hundreds of participants with Ménière’s disease can be
successfully recruited to enter data into a large data collection
platform. It is hoped that this initial feasibility study will pave the
way for expansion of the registry to answer fundamental and complex
questions alike, regarding the nature of Ménière’s disease.