ILLUMINATE CUP
Research type
Research Study
Full title
ILLUMINATE CUP. Illuminating the Lived Experience: Listening, Understanding and Meaning-makIng - A Narrative Analysis of the diagnosis, Treatment and Experience of Cancer of Unknown Primary
IRAS ID
366250
Contact name
Alison Taylor
Contact email
Sponsor organisation
The Clattebridge Cancer Centre
Duration of Study in the UK
3 years, 0 months, 1 days
Research summary
Cancer of Unknown Primary (CUP) is a challenging diagnosis in which metastatic cancer is identified but the site of where the cancer started in the body cannot be found. People living with CUP often experience significant uncertainty, complex investigations, and rapid decision‑making, yet very little research has explored their lived experience or the impact of this uncertainty on patients and carers. This study, ILLUMINATE CUP, aims to address this gap by gathering in‑depth accounts from people affected by CUP to better understand their diagnostic and treatment journeys.
The purpose of the research is to explore how patients and carers experience the CUP pathway, including investigations, communication with clinicians, decision‑making, emotional impact, and the support they receive. The study will use focus groups and individual interviews to invite participants to share their stories in their own words. These methods are designed to create a safe, supportive environment where participants can reflect on what helped, what was difficult, and what could be improved.
The primary aim is to generate clear insight into the lived experience of CUP from the perspectives of both patients and carers. By analysing these narratives, the study seeks to identify common themes, unmet needs, and opportunities to strengthen care. The intended outcome is to use these insights to inform improvements to CUP pathways, information resources, and support services. Findings will be shared with clinicians, service leads, and national stakeholders to help shape future care for people with CUP.
Ultimately, this research aims to ensure that the voices of people living with CUP are heard and used to drive meaningful change in how CUP care is delivered.
REC name
North East - York Research Ethics Committee
REC reference
26/NE/0126
Date of REC Opinion
2 Jul 2026
REC opinion
Favourable Opinion