Kerry Leeson-Beevers, National Development Manager for ASUK, along with ten other patient representatives, who are all members of the Patient Think Tank (PTT) of a European research consortium for methodology of rare disease trials called ASTERIX, were interviewed to discuss their views on clinical trial design and the challenges faced for rare diseases.
This study highlights the need for engaging with patient representatives at an early stage in clinical trial development so patients views can be integrated into the design. This should improve the level of participation which when looking at small cohorts of people, such as those affected by rare conditions is vitally important.
You can read the full study here
The article was published on the Orphanet Journal of Rare Diseases. To view the research via the website or find out more about Orphanet please click here
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