Rare Cancers Bill

The Rare Cancers Bill would boost research by requiring a UK-wide review of orphan drug rules for cancer medicines and placing a duty on the Health Secretary to promote rare cancer research and make it easier to contact patients for trials. It would help recruit participants by allowing NHS England to share data (with data protection safeguards) and by creating a Be Part of Research‑style contact registry, plus it would appoint a National Specialty Lead for rare cancers. It defines a rare cancer as affecting not more than 1 in 2,000 people and sets out UK-wide applicability (with England and Wales for the research duties) and would take effect two months after passage.

The Rare Cancers Bill would require a government review of marketing authorisations for orphan cancer medicines, with a published report within three years that compares international practice. It also creates a framework to boost rare-cancer research—appointing a National Specialty Lead and enabling recruitment of trial participants—while extending NHS England powers to share information for relevant trials in line with data protection rules. The bill defines a rare cancer as affecting no more than 1 in 2,000 people in the UK and sets the start date at two months after passage, with its provisions extending across the UK.