RAD-PIT: Novel PPIE-driven protocol co-design for the use of Macimorelin as a diagnostic test of pituitary function for patients undergoing proton and photon radiotherapy

Perry Melissa B; Fernando Osorio; Ben Garlick; Emily Weaver-Holding; Murray Robert D; Catherine McBain; David Thomson; Martin Glen P; Chen Lillian R; Higham Claire E

doi:10.1530/endoabs.117.P87

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Endocrine Abstracts (2026) 117 P87 | DOI: 10.1530/endoabs.117.P87

SFEBES2026 Poster Presentations Endocrine Cancer and Late Effects (12 abstracts)

RAD-PIT: Novel PPIE-driven protocol co-design for the use of Macimorelin as a diagnostic test of pituitary function for patients undergoing proton and photon radiotherapy

Melissa B Perry ¹ , Fernando Osorio ² , Ben Garlick ³ , Emily Weaver-Holding ⁴ , Robert D Murray ^5,6 , Catherine McBain ^1,7 , David Thomson ^1,7 , Glen P Martin ⁷ , Lillian R Chen ¹ & Claire E Higham ^1,7

Author affiliations

¹The Christie NHS Foundation Trust, Manchester, United Kingdom; ²Pharmanovia, Essex, United Kingdom; ³Public Advisor, Manchester, United Kingdom; ⁴Vocal, Manchester, United Kingdom; ⁵Leeds Teaching Hospitals NHS Trust, Leeds, United Kingdom; ⁶University of Leeds, Leeds, United Kingdom; ⁷University of Manchester, Manchester, United Kingdom

Growing evidence suggests that co-designing research protocols with patient and public involvement and engagement (PPIE) members, industry partners and other relevant stakeholders enhances acceptability, feasibility, and engagement. There are no recognised UK protocol co-design recommendations. This project aimed to explore best practice for co-design by developing a research protocol for the use of Macimorelin to diagnose Growth Hormone Deficiency in adults and teenagers and young adults (TYAs), with brain, head, and neck cancer experience. Macimorelin is a NICE-approved diagnostic test, with reduced side effects, currently untested in this cranial radiotherapy population. Validation of its effectiveness may be too burdensome for these vulnerable patients; it is, therefore, imperative that we investigate patient/clinician acceptability. Co-design took place through in-person and online exploratory stakeholder events across three work packages (WPs) to understand (1) the barriers of working together, (2) the acceptability of the diagnostic test, and (3) the creation of the research protocol. Stakeholders included PPIE members, project leads, pharmaceutical representative, clinicians, statistician, and PPIE expert host (Vocal). We captured feedback about the process from all involved. Eight working together principles were identified during WP1: trust, honesty, communication, unity, respect, inclusivity, learning, and support. These formed our ‘Working Together Guidelines’, ensuring open, respectful and supportive communication throughout the project. In WP2, events for TYAs and adults were held, increasing engagement and allowing tailored age-appropriate sessions. Contributors shared protocol preferences and reservations, resulting in a potential protocol to take forward to WP3. WP3 was held online (5 sessions) and involved clinicians, scientists and public advisors (n = 2) to create a fully informed and co-designed research protocol. The process was well-received by all stakeholders. Collaborative research protocol co-design for endocrine studies using working together principles is inclusive, generates novel and diverse perspectives and enhances equality and satisfaction for all stakeholders. (Stakeholder quotes available for presentation)