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Our Involvement in Research

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Supporting Research in the field of Barrett’s Oesophagus and Oesophageal Cancer

Our commitment to advancing scientific knowledge and improving patient outcomes is reflected in our extensive involvement in numerous ground breaking research projects and clinical trials relating to Barrett’s Oesophagus and Oesophageal cancer.

We have a long history of collaboration with leading researchers, healthcare professionals, and institutions to drive innovation and enhance early detection, diagnosis, and treatment of these conditions.

By fostering a robust research environment, we aim to make significant strides in understanding and combating oesophageal cancer.

If you would like to discuss research opportunities or learn more about our initiatives, please get in touch.

Clinical Reference Groups & Development of Guidelines

Our Founder and Chairman, Mimi McCord is regularly invited to share her extensive knowledge within Barrett’s and Oesophageal Cancer reference groups:

  • NOGCA (National Oesophago-Gastric Cancer Audit): Clinical Reference Group (Lay Representative, Ongoing). The National Oesophago-Gastric Cancer Audit (NOGCA) evaluates the quality of care received by people diagnosed with oesophago-gastric (OG) cancer in England and Wales. It helps NHS cancer services identify areas for improvement and highlights regional variations in care. 
  • European Association of Endoscopic Surgery (EAES): Rapid Guideline for the Surgical Management of Paraesophageal Hernia (Lay Representative, 2023)
  • PEUGIC (Post Endoscopy Upper Gastrointestinal Cancer) Research for Patient Benefits Research: Reducing the Rate of Missed Diagnoses of Oesophageal and Gastric Cancer During Endoscopy through Endoscopy Provider Root Cause Analysis of Potentially Missed Cancers
  • GOLF: Randomised Controlled Trial for Treatment of Gastro-oesophageal Reflux Disease; Linx Management System vs. Fundoplication
  • Cytoprime2: Cytopsonge in Primary Care for Earlier Oesophageal Cancer Detection
  • Cytoprime: Cytosponge in Primary and Community Care
  • Research Priority Setting for Oesophago-gastric Malignancies (Steering Group Member)
  • PEUGIC(Post Endoscopy Upper Gastrointestinal Cancer): Identifying Quality Indicators for Upper Gastrointestinal Endoscopy (Steering Group Member)
  • DELTA: Integrated Diagnostic Solution for Early Detection of Oesophageal Cancer (Advisory Board Member)
  • Professor Sir Mike Stratton’s CRUK Grand Challenge winning team (Patient Advocate, 2017)
  • Mutographs of Cancer: How Unusual Patterns of Mutation are Induced by Different Cancer-Causing Events. Mimi McCord, Founder and Chairman of Heartburn Cancer UK, is currently involved as one of the patient advocates in this fascinating international project, funded by Cancer Research UK and involving 5000 patients across five continents.
  • Acetic Acid Guided Biopsies in Barrett’s Surveillance for Neoplasia Detection versus Seattle Protocol; a Randomised Tandem Endoscopy Trial (ABBA) (Co-author)
  • BEST2 & 3 Studies: Evaluation of Non-Endoscopic Immunocytological Device (Cytosponge), (Lay Member – Advisory Committee)
  • Addenbrookes Hospital, Cambridge: Under the original charity name, The McCord Oesophageal Cancer Fund, provided two ultra-thin endoscopes, which formed part of an award, won by a research group at Addenbrookes

NICE Guideline Development Groups

Mimi has been extensively involved in the development of NICE guidelines, participating as a Lay Representative for the following:

British Society of Gastroenterology

 In addition, Mimi has worked on the following projects:

 

The Role of Lay Representatives

Lay representatives play a crucial role in research, bringing invaluable first-hand knowledge of how specific conditions impact daily life. As service users of the NHS, they provide unique perspectives that help shape studies and ensure they remain relevant to real-world experiences.

Their roles may include:

  • Contributing to research studies: Lay representatives can offer insights into their personal experiences, highlight key issues, review patient-facing materials to ensure clarity, suggest effective ways to share findings, and assist in presenting results to the wider public
  • Serving on boards or committees: They can also participate in oversight roles, helping to guide the progress of research projects and ensuring that they stay on track and aligned with patient needs

Are you Looking for Research Support?
Are you Undertaking Clinical Trials?

The HCUK team are pleased to support those working in the Barrett’s oesophagus Oesophageal cancer fields who are undertaking patient studies.

We have supported many trials and research studies, for example:

  • Add-Aspirin Trial:  Undertaken in 2015, this was a large clinical trial taking place in the UK, Republic of Ireland and India. The trial involved 11,000 participants to help find out whether using regular aspirin after treatment of early stage cancer can help stop the cancer coming back.
  • LINACRE Trial:  We supported The Oxford Clinical Trials Unit undertake exciting new clinical trial for patients with Barrett’s oesophagus. This trial gave patients the opportunity to be randomised (by chance) to an alternative treatment or continue long-term medication. The alternative treatment involved a day case surgical procedure using key hole surgery to place a LINX device around the oesophagus. The LINX device is used to prevent acid reflux entering into the oesophagus and may reduce symptoms and the requirement for long-term medication. 
  • CentRIC study: In July 2024 we provided support to a research fellow at the University of Southampton, working in the Centre for Psychosocial Research in Cancer (CentRIC), to recruit testers for a completely free to use online resource to support the self-management of emotional wellbeing of people affected by cancer.
  • Open Medical research: In July 2024 we supported Open Medical with recruiting research volunteers for their capsule sponge test to detect oesophageal cancer early.
  • Research team from the Universities of Southampton and Cambridge: In September 2024 we supported the call for participants for a new study using the capsule sponge test to detect oesophageal cancer recurrence after treatment.
  • Patients with Limited Spread Cancer: In November 2024 we sourced participants to support a study assessing the utility of surgery versus current palliative chemotherapy in patients with oligometastatic (limited spread) gastro-oesophageal cancers. The team, headed up by HCUK Trustee Sheraz Markar, are assessing what patients feel should be the primary outcome of treatment, specifically with regards to the quality of life that patients experience following receipt of certain treatments. We look forward to hearing about the outcomes.
  • The UK & Ireland Oesophagogastric Research Group: In February 2025 we supported the call for input from patients and caregivers with experience or interest in oesophageal and gastric cancers,  to participate in research to improve early detection and the development of better treatments.
  • GOLF study: is comparing two different types of surgery for reflux disease. If you have confirmed GORD (acid reflux) that is not well controlled with medicines or you are not able to have these medicines, and you are considering anti-reflux surgery, you may be interested in participating. 
  • Heartburn Health and the BEST4 studies: we are supporting this research which is exploring new ways to detect and prevent oesophageal cancer in people with persistent heartburn, indigestion, or acid reflux.
  • Queen Mary University of London research group: invited people with experience of Barrett’s oesophagus to share their views in a small discussion group in September 2025 and we supported the recruitment of participants.
  • Health Technology Wales: a review of the Capsule Sponge Test for use in Wales to help detect Barrett’s Oesophagus. 

If you have a project where you think we can be of assistance please get in touch.

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