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.

Sign up for our monthly newsletter below

MPS Society

MPS House, Repton Place

White Lion Road, Amersham

Buckinghamshire, HP7 9LP

  • Twitter - White Circle
  • Facebook - White Circle

Registered Charity No.1143472 & SCO41012. Registered Company No. 7726882.

Images and stories may not be reproduced without express written permission. 

© 2019 Society for Mucopolysaccharide Diseases