C Moss1, A Haire2, F Cahill2, D Enting2,3, S Hughes2,3, D Smith3, E Sawyer3, A Davies4, J Zylstra4, K Haire5, A Rigg3, M Van Hemelrijck2. 1. King's College London, School of Cancer and Pharmaceutical Sciences, Translational Oncology and Urology Research (TOUR), Guy's Hospital, 3rd Floor Bermondsey Wing, London, SE1 9RT, UK. charlotte.moss@kcl.ac.uk. 2. King's College London, School of Cancer and Pharmaceutical Sciences, Translational Oncology and Urology Research (TOUR), Guy's Hospital, 3rd Floor Bermondsey Wing, London, SE1 9RT, UK. 3. Comprehensive Cancer Centre, Guy's and St Thomas' NHS Foundation Trust, London, UK. 4. Department of Upper Gastrointestinal Surgery, Guy's and St Thomas' NHS Foundation Trust, London, UK. 5. South East London (SEL) Accountable Cancer Network, Guy's and St Thomas' NHS Foundation Trust, London, UK.
Abstract
BACKGROUND: The burden of disease due to cancer remains substantial. Since the value of real-world evidence has also been recognised by regulatory agencies, we established a Research Ethics Committee (REC) approved research database for cancer patients (Reference: 18/NW/0297). CONSTRUCTION AND CONTENT: Guy's Cancer Cohort introduces the concept of opt-out consent processes for research in a subset of oncology patients diagnosed and treated at a large NHS Trust in the UK. From April 2016 until March 2017, 1388 eligible patients visited Guy's and St Thomas' NHS Foundation Trust (GSTT) for breast cancer management. For urological cancers this number was 1757 and for lung cancer 677. The Cohort consists of a large repository of routinely collected clinical data recorded both retrospectively and prospectively. The database contains detailed clinical information collected at various timepoints across the treatment pathway inclusive of diagnostic data, and data on disease progression, recurrence and survival. CONCLUSIONS: Guy's Cancer Cohort provides a valuable infrastructure to answer a wide variety of research questions of a clinical, mechanistic, and supportive care nature. Clinical research using this database will result in improved patient safety and experience. Guy's Cancer Cohort promotes collaborative research and will accept applications for the release of anonymised datasets for research purposes.
BACKGROUND: The burden of disease due to cancer remains substantial. Since the value of real-world evidence has also been recognised by regulatory agencies, we established a Research Ethics Committee (REC) approved research database for cancerpatients (Reference: 18/NW/0297). CONSTRUCTION AND CONTENT: Guy's Cancer Cohort introduces the concept of opt-out consent processes for research in a subset of oncology patients diagnosed and treated at a large NHS Trust in the UK. From April 2016 until March 2017, 1388 eligible patients visited Guy's and St Thomas' NHS Foundation Trust (GSTT) for breast cancer management. For urological cancers this number was 1757 and for lung cancer 677. The Cohort consists of a large repository of routinely collected clinical data recorded both retrospectively and prospectively. The database contains detailed clinical information collected at various timepoints across the treatment pathway inclusive of diagnostic data, and data on disease progression, recurrence and survival. CONCLUSIONS:Guy's Cancer Cohort provides a valuable infrastructure to answer a wide variety of research questions of a clinical, mechanistic, and supportive care nature. Clinical research using this database will result in improved patient safety and experience. Guy's Cancer Cohort promotes collaborative research and will accept applications for the release of anonymised datasets for research purposes.
Entities:
Keywords:
Cancer; Observational data; Real world evidence
Authors: Charlotte Moss; Saoirse Dolly; Beth Russell; Mary Lei; Sharmista Ghosh; Sophie Papa; Richard Sullivan; Mieke Van Hemelrijck; Anne Rigg Journal: Cancer Control Date: 2020 Jul-Aug Impact factor: 3.302
Authors: Alfred Chung Pui So; Christina Karampera; Muhammad Khan; Beth Russell; Charlotte Moss; Maria J Monroy-Iglesias; Kiruthikah Thillai; Debra Hannah Josephs; Elias Pintus; Sarah Rudman; Mieke Van Hemelrijck; Saoirse Dolly; Deborah Enting Journal: BMC Urol Date: 2022-04-29 Impact factor: 2.090