CancerILLUMINATE CUPNCT07712965
Living Without Answers - ILLUMINATE CUP
An observational study of Cancer and CUP, run by The Clatterbridge Cancer Centre NHS Foundation Trust.
Trial summary
This project aims to improve care, service delivery, and patient experience for people with Cancer of Unknown Primary (CUP) by addressing a critical gap in understanding the lived experiences of patients and carers. Read more about this study
- Who is it for?
- Ages 18 years and older
- Conditions the study is for
- Cancer, CUP, Cancer Unknown Primary
- How many people
- 20 participants
- Where
- No sites listed yet
- Study dates
- 1 Sep 2026to 1 Sep 2028
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- No healthy volunteers
- Adult, Older adult
Study population: Participants for this study are patients with CUP and their carers
Who may be able to join
- have a confirmed diagnosis of cancer of unknown primary, or care for someone who has a diagnosis of cancer of unknown primary
- are 18 years old and above
- have capacity to provide informed consent
Who cannot join
- do not have capacity to provide informed consent
- are deemed too unwell by the clinical team to take part in the research
Trial locations and contacts
No sites are listed yet. Contact the study team or a site near you to ask about taking part.
About this study
Official title: Illuminating the Lived Experience: Listening, Understanding and Meaning-makIng - A Narrative Analysis of the Diagnosis, Treatment and Experience of Cancer of Unknown Primary
This project aims to improve care, service delivery, and patient experience for people with Cancer of Unknown Primary (CUP) by addressing a critical gap in understanding the lived experiences of patients and carers. By exploring how individuals navigate diagnostic uncertainty, fragmented care pathways, and interactions with healthcare professionals, the study will identify key points of distress, unmet need, and communication breakdown.
The findings will support the development of more person-centred and compassionate care, including clearer communication, improved service coordination, and better recognition of the psychological and emotional impact of CUP. By highlighting the challenges of uncertainty and lack of diagnostic clarity, the project will inform more tailored support for both patients and carers.
Read more
A unique strength of this study is the inclusion of a professional illustrator to visually capture focus group discussions, supporting the narrative inquiry approach and aiding the interpretation of shared meanings within the data. These visual summaries will enhance engagement, inclusivity, and accessibility, ensuring that complex experiences are communicated clearly to patients, carers, clinicians, and wider audiences.
Through strong PPIE involvement and accessible dissemination, patient and carer voices will directly inform service improvements and future care design.
Overall, this project will help ensure CUP care is more coordinated, communicative, inclusive, and responsive to patient and carer needs, ultimately improving experience, wellbeing, and trust in healthcare services.
- Conditions
- Cancer, CUP, Cancer Unknown Primary
- Medical subject headings
- Neoplasms, Neoplasms, Unknown Primary
What is being measured
The primary outcome is the main question the study is designed to answer.
Inform improvements to CUP pathways, information resources, and support services
Narrative and thematic findings derived from qualitative analysis of participant focus groups and semi-structured interviews, including themes relating to diagnostic uncertainty, treatment experiences, communication with healthcare professionals, psychological impact, coping, and meaning-making
Measured: 2 years
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted20 Jul 2026
- Study start1 Sep 2026 (estimated)
- Primary completion1 Sep 2027 (estimated)
- Study completion1 Sep 2028 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for CancerStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Case only
- Time perspective
- Prospective
- Enrolment
- 20 participants (estimated)
Sponsor and investigators
- Lead sponsor
- The Clatterbridge Cancer Centre NHS Foundation Trust
- Sponsor type
- University, hospital or other
- Responsible party
- Sponsor
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT07712965
- Sponsor's protocol ID
- C1624
- Other IDs
- 366250
- Acronym
- ILLUMINATE CUP
- Status last verified
- Jul 2026
- First submitted
- 8 Jul 2026
- Last updated
- 20 Jul 2026
- Results posted
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- Undecided
Study at a glance
From the registry record, last updated by the sponsor on 20 Jul 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Illuminating the Lived Experience: Listening, Understanding and Meaning-makIng - A Narrative Analysis of the Diagnosis, Treatment and Experience of Cancer of Unknown Primary
- ClinicalTrials.gov ID
- NCT07712965
- Acronym / sponsor ID
- ILLUMINATE CUP / C1624
- Conditions
- Cancer, CUP, Cancer Unknown Primary
- Study type
- Observational
- Recruitment status
- Not yet recruiting
- Enrolment
- 20 participants (estimated)
- Lead sponsor
- The Clatterbridge Cancer Centre NHS Foundation TrustUniversity, hospital or other
- Study start
- 1 Sep 2026 (estimated)
- Primary completion
- 1 Sep 2027 (estimated)
- Study completion
- 1 Sep 2028 (estimated)
- First posted
- 20 Jul 2026 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
This project aims to improve care, service delivery, and patient experience for people with Cancer of Unknown Primary (CUP) by addressing a critical gap in understanding the lived experiences of patients and carers. By exploring how individuals navigate diagnostic uncertainty, fragmented care pathways, and interactions with healthcare professionals, the study will identify key points of distress, unmet need, and communication breakdown.
The findings will support the development of more person-centred and compassionate care, including clearer communication, improved service coordination, and better recognition of the psychological and emotional impact of CUP. By highlighting the challenges of uncertainty and lack of diagnostic clarity, the project will inform more tailored support for both patients and carers.
A unique strength of this study is the inclusion of a professional illustrator to visually capture focus group discussions, supporting the narrative inquiry approach and aiding the interpretation of shared meanings within the data. These visual summaries will enhance engagement, inclusivity, and accessibility, ensuring that complex experiences are communicated clearly to patients, carers, clinicians, and wider audiences.
Through strong PPIE involvement and accessible dissemination, patient and carer voices will directly inform service improvements and future care design.
Overall, this project will help ensure CUP care is more coordinated, communicative, inclusive, and responsive to patient and carer needs, ultimately improving experience, wellbeing, and trust in healthcare services.
Study design
- Observational model
- Case only
- Time perspective
- Prospective
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older adult
- Study population
- Participants for this study are patients with CUP and their carers
Key inclusion criteria (3 listed)
- have a confirmed diagnosis of cancer of unknown primary, or care for someone who has a diagnosis of cancer of unknown primary
- are 18 years old and above
- have capacity to provide informed consent
Key exclusion criteria (2 listed)
- do not have capacity to provide informed consent
- are deemed too unwell by the clinical team to take part in the research
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
Inform improvements to CUP pathways, information resources, and support services
Time frame: 2 years
Narrative and thematic findings derived from qualitative analysis of participant focus groups and semi-structured interviews, including themes relating to diagnostic uncertainty, treatment experiences, communication with healthcare professionals, psychological impact, coping, and meaning-making
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 20 Jul 2026.
- Individual participant dataSharing planned: Undecided
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
Questions about this trial
What is this clinical trial studying?
An observational study of Cancer and CUP, run by The Clatterbridge Cancer Centre NHS Foundation Trust.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 3 inclusion and 2 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: opening soon, as of the sponsor's last update on 20 Jul 2026. Status can change between updates, so confirm with the study contact before making plans.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Alison Taylor (0151 556 5000, Alisontaylor12@nhs.net), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Inform improvements to CUP pathways, information resources, and support services (time frame: 2 years). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 20 Jul 2026.