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Comparison of treatment and survival in European patients with a gastrointestinal stromal tumor-EURECCA ( ODR1920_015 )

Leiden University · Academic

Expired The latest version ended on 25 October 2023. The September 2026 register still lists the agreement, but its term has passed.

Reference
DARS-NIC-656850-Y1V4Q
Latest version
v1.5
Term of latest version
25 April 2023 to 25 October 2023
Start date
Before 25 April 2023
Data controller
Sole Data Controller
Commercial purposes
No
Sublicensing
No
Files released to date
0

Why the data was released

Objective for processing

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?

Processing activities

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.

Expected output

Not stated in the register.

Expected measurable 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.

Benefits reported so far

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.

Datasets on the latest version

Legal basis for provision: Not stated

Datasets approved under DARS-NIC-656850-Y1V4Q-v1.5
DatasetType of dataSensitivity FrequencyConfidential data
NDRS Cancer Registrations Anonymised - ICO Code Compliant Sensitive One-Off Does not include the flow of confidential data
NDRS Linked HES APC Anonymised - ICO Code Compliant Sensitive One-Off Does not include the flow of confidential data
NDRS National Radiotherapy Dataset (RTDS) Anonymised - ICO Code Compliant Sensitive One-Off Does not include the flow of confidential data
NDRS Systemic Anti-Cancer Therapy Dataset (SACT) Anonymised - ICO Code Compliant Sensitive One-Off Does not include the flow of confidential data

Files released

Files released counts only files released externally by DARS. Access granted in NHS England's own systems, such as its Secure Data Environment, is not included.

No files recorded as released under this agreement.

Version history

The register lists each renewal of this agreement as a separate row. This site has 1 version — earlier versions exist, but none has been listed in an edition this site holds.

DARS-NIC-656850-Y1V4Q-v1.5 25 April 2023 to 25 October 2023
Title
Comparison of treatment and survival in European patients with a gastrointestinal stromal tumor-EURECCA ( ODR1920_015 )
Commercial
No
Sublicensing
No
Datasets
4
Files released
0

Datasets: NDRS Cancer Registrations; NDRS Linked HES APC; NDRS National Radiotherapy Dataset (RTDS); NDRS Systemic Anti-Cancer Therapy Dataset (SACT)

Register history

When this agreement appeared in, or was edited in, each monthly edition of the register. Built by comparing every edition this site holds.

Cite this page

NHS England (2026) Data Uses Register, September 2026 edition, agreement DARS-NIC-656850-Y1V4Q, “Comparison of treatment and survival in European patients with a gastrointestinal stromal tumor-EURECCA ( ODR1920_015 )”. Read via NHS Data Access Explorer (unofficial), https://healthdatauses.uk/agreements/dars-nic-656850-y1v4q/ (accessed [date]).

This address stays the same, but the page is rebuilt with each monthly edition, so the citation names the edition it shows. Every edition's data is kept in the facts store.

Source: datausesregister_september2026.xlsx, September 2026 edition of the NHS England Data Uses Register. Search that workbook for DARS-NIC-656850-Y1V4Q to see the original rows.