Poster presentation | Audit of rare disease clinical trial support service

Patient retention in rare disease clinical trials is crucial when considering the limited patient numbers available. It has been reported that 18% of patients randomised into a clinical trial end up withdrawing.* This number is predicted to be even higher in rare disease clinical trials. There is a considerable burden to the patient/their family to take part in a clinical trial.

This audit aims to determine if commissioning a specialised clinical trial support service impacts on study retention rates in rare disease studies.


We are the only registered charity providing professional support to individuals and families affected by MPS, Fabry or a related disease in the UK.

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