Delays in Translating Rare Cancer Research to Patient Treatments in UK Clinics

Project hypothesis (v3): Pilot Protocol for Tracking Rare Cancer Research Translation in UK Clinics Target users: Clinical research coordinators, oncologists, and rare cancer patient advocates in UK clinics seeking to identify and reduce delays in bringing new research-based treatments to patients. How it would work: A simple tracking protocol will be piloted in selected clinics to document each step from laboratory research discovery to clinical trial setup and patient access for rare cancers. This protocol will capture dates, responsible parties, and bottlenecks, producing a timeline for each new treatment candidate. The output is a report highlighting where delays occur and potential quick wins for process improvement. First version: The first version will be a paper or spreadsheet-based tracking form used by research coordinators in two clinics treating rare cancers. The form will include fields for research discovery date, trial approval date, first patient enrollment, and treatment availability in clinic. The pilot will run for three months, tracking all new rare cancer research projects entering the translation pipeline. Alternatives to investigate: Existing NHS or research institution tracking systems for clinical trial setup and translation; informal communication channels between research labs and clinics; commercial trial management software. Difference to test: Unlike generic trial tracking, this protocol focuses specifically on rare cancers and the full translation pathway, not just trial setup. It aims to identify unique bottlenecks for rare cancers that may be missed in broader systems. Human responsibilities: Research coordinators and oncologists will fill out the tracking forms, review timelines, and discuss identified bottlenecks in regular meetings. Patient advocates may provide feedback on perceived delays and communication gaps. AI contribution and limits: AI is not required for the first version. If scaled, simple analytics could be used to flag outlier delays, but initial analysis will be manual due to small sample size and need for contextual understanding. Data and access needed: Access to clinic records on research projects, trial approvals, and patient enrollments; consent from participating clinics and staff; no patient-identifiable data will be collected in the pilot phase. Source-supported setting and capacity: The Prime Minister and Secretary of State for Health and Social Care last week set out in their meeting with Archie Goodburn their commitment to closing the translation gap between the lab and treatments that benefit patients in the clinic for rare cancers. Ordered steps and owners: 1. Confirm participation with two UK clinics treating rare cancers and secure consent from research coordinators. 2. Conduct a baseline review of current translation timelines for recent rare cancer research projects. 3. Implement the tracking protocol for all new rare cancer research projects over a three-month period, with regular check-ins and a final review meeting. Minimum resources and dependencies: Existing clinic staff (research coordinators, oncologists), paper or spreadsheet tracking forms, meeting space for review sessions, and access to non-identifiable project records. No new software or hardware required for the pilot. Confirm staff availability, partner permission and safe operating instructions before starting. Costs and affordability unknowns: Costs are unknown and not reported. Each participating clinic must obtain local quotes for any additional staff time or materials required and verify affordability before committing to the pilot. How a newcomer can help: A newcomer or volunteer can assist by entering data into the tracking forms under supervision, attending review meetings, and helping to organize meeting notes. Tasks are limited to 2-3 hours per week for the three-month pilot and will be supervised by the research coordinator. Pilot and success criteria: Proposed pilot target: At least 5 rare cancer research-to-clinic translation cases tracked in 2 clinics over 3 months. Success threshold: 80% of cases have a completed timeline and at least one actionable bottleneck identified per clinic. Measured by completed tracking forms and meeting notes. Establish baseline timeline-completion rates from comparable previous projects before the pilot; no baseline value is known. Risks and safeguards: Risks include incomplete data entry, staff time constraints, and resistance to additional paperwork. There may be privacy or data-sharing concerns, though no patient data is collected. Findings may not generalize beyond pilot clinics. When to stop or change direction: If fewer than 3 cases are tracked or no actionable bottlenecks are identified after 3 months, the pilot will be stopped or redesigned. If staff report excessive burden, the protocol will be simplified or halted.