Patient retention in clinical trials

With only limited numbers of patients available to take part in clinical trials for rare disease treatments it’s crucial to help those who take part stay involved.

Studies show that almost one in five participants of randomised trials withdraw for some reason.

Smiling girl with curly hair sitting inside a trampoline, with an outdoor brick wall and wooden fence in the background.

The most common factors that lead people to stop being involved are:

  • Personal or family circumstances

  • Financial constraints

  • Conditions not improving

  • Location of trials

  • Side effects of treatments

When surveyed about their experiences of clinical trials, 38 per cent of patients who withdrew said that attending site visits was stressful, compared to just 16 per cent of those who completed their trial.

An audit of five clinical trials for which we offered specialist support, involving 166 patients across 51 sites, showed that the withdrawal rate was lower than that reported in the literature.

Making it easier to take part in clinical trials and improving patients’ experience helps to improve retention rates and strengthens the outcomes from rare disease studies.

A scientific poster titled 'Audit of a rare disease clinical trial support service' with sections on introduction, aims, methods, results, conclusions, and references. It includes a world map highlighting clinical trial sites by continent, a table showing number of sites and patient recruitment data, a bar chart of trial withdrawal rates, and icons illustrating support provided to patients during clinical trials.
A woman with light skin and long, wavy brown hair, wearing a blue top and a silver beaded necklace, standing in front of window blinds with greenery visible outside.

“Taking part in a clinical trial can be stressful for patients and their families, but travelling to the clinical trial site and managing expenses does not have to be. We take care of their travel needs and reimbursement.”

Benedicta Marshall-Andrew | Head of Clinical Trial Support Team

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