Introduced as a Private Member’s Bill by Dr. Scott Arthur MP in October 2024, after the death of his brother from a rare cancer, the legislation aims to increase research investment, improve data collection, and enhance access to clinical trials for rare cancers in the UK.
Key Provisions of the Act
- Research Leadership: Appoints a named individual responsible for overseeing research delivery for rare cancer treatments.
- Orphan Drug Review: Places a duty on the government to review orphan drug regulations specifically for rare cancers.
- Clinical Trial Access: Ensures patients can be more easily contacted about relevant trials to improve participation and data quality.