NHS Digital Data Release Register - reformatted

Leiden University projects

12 data files in total were disseminated unsafely (information about files used safely is missing for TRE/"system access" projects).

Comparison of treatment and survival in European patients with a gastrointestinal stromal tumor-EURECCA ( ODR1920_015 ) — DARS-NIC-656850-Y1V4Q

Type of data: information not disclosed for TRE projects

Opt outs honoured: Anonymised - ICO Code Compliant (Does not include the flow of confidential data)

Legal basis:

Purposes: No (Academic)

Sensitive: Sensitive

When:DSA runs 2023-04-25 — 2023-10-25

Access method: One-Off

Data-controller type: LEIDEN UNIVERSITY

Sublicensing allowed: No


  1. NDRS Cancer Registrations
  2. NDRS Linked HES APC
  3. NDRS National Radiotherapy Dataset (RTDS)
  4. NDRS Systemic Anti-Cancer Therapy Dataset (SACT)


The aim of this study is to describe and compare the treatment and (overall and relative) survival of patients diagnosed with Gastrointestinal stromal tumors (GIST) in European countries participating in the EURECCA consortium.

Research questions with this aim are:
1. What are the differences in treatment strategy between the countries for patients with a GIST?

2. Are there differences between European countries regarding the outcomes of GIST?
a. Overall Survival
b. Relative Survival (an estimation of the cancer specific survival by calculating observed / expected survival (matched by country, sex, age and year)

3. When using country as an instrumental variable; can we identify factors in treatment strategy of GIST which affect the clinical outcomes?

Yielded Benefits:

Unfortunately, due to COVID crisis last years and adjustments of data delivery we had no opportunity to analyze the data yet. We have now completed the data collection and will start data analysis. We expect to start and complete data analysis next year. After that, we will publish our results in a peer reviewed journal We would like to requenst to extend the duration of contract with one year, until 15-04-2024.

Expected Benefits:

Comparison of treatment and survival in European patients with a gastrointestinal stromal tumor (GIST), in order to improve understanding of epidemiology and treatment of GIST in Europe.


Retrospective, international cohort study. Data from all participating countries consists of cancer registry data. Specific attention will be given to a uniform definition of the variables and patient inclusion.

Males and females of 18 years or older, diagnosed with GIST (morphology code: 8936/3) between 2002 and 2018. All localizations will be included.

All patients with GIST will be identified from the cancer registries in the European countries and merged in one file.

Descriptive data of patient characteristics, tumor characteristics, treatment and survival will be
collected. These data will be compared between the different countries and stratified for high or low risk local GIST, metastatic GIST and age.

1. Characteristics of the patient and tumor from the participating countries
2. Treatment strategies for all patients, and stratified for local or metastatic and age.
3. Outcomes (overall survival, relative survival) of GIST in participating countries, for all
patients and stratified for local GIST, metastatic GIST and age.