National GIST Register

GIST Cancer UK works with the National Cancer Registration and Analysis Service (NCRAS).

NCRAS was originally part of Public Health England and moved to NHS Digital in October 2021.

NCRAS uses data provided by patients with cancer and collected by the NHS in England as part of their care and support. NCRAS uses this data to detect changes in the health of the population and to help the NHS and researchers improve the diagnosis and treatment of cancer.

NCRAS registers tumours, including gastrointestinal stromal tumours (GISTs). It uses the International Classification of Diseases for Oncology (ICD-O) system, which is specified by the World Health Organization (WHO).

Since 2016, NCRAS has been collecting and recording molecular diagnostic tests on tumours. This includes mutational status information for GIST cancer patients.

Members of the GCUK Medical advisory board have been working with NCRAS to understand the molecular sub-groups of GIST. Information from NCRAS supports our research and develops our clinical understanding of these rare tumours.

The following slides were prepared by the National Disease Registration Service (NDRS) Molecular and Genomics analytical team and presented to the GIST Cancer UK Medical Advisory Board in August 2023.

They present a very interesting set of qualified GIST specific molecular testing data for the years years 2016 – 2020 covering:

• Incidence
• Classification
• Diagnosis
• The list of laboratories who have supplied the data
• Ethnicity
• Socioeconomic status
• Younger GIST patients
• Tumour stage
• Tumour grade
• Data supplied by Cancer Alliance
• Molecular status percentages
• Summary of data 2016-2020

GCUK are very grateful to NDRS for sharing this information with us.