Cancer Registry-wide study in infants with neuroblastoma; Task 11.4 of the ENNCCA Network of Excellence

Data-sharing agreement from NHS England Data Uses Register. Evidence status: source reported.

Organisation: UNIVERSITY COLLEGE LONDON (UCL)
Published: 2026-09-01
Source reference: DARS-NIC-656760-F8Y3C-v3.2
Jurisdiction: England
Licence: Open Government Licence v3.0, subject to NHS England terms and exclusions

Register reference: DARS-NIC-656760-F8Y3C-v3.2
Applicant type: Academic
Data controllers: UNIVERSITY COLLEGE LONDON (UCL)
Agreement period: 2026-09-01 to 2027-08-20
For commercial purposes (as marked in the register): No
Release files listed by NHS England: 0

Data approved

NDRS Cancer Registrations

Objective, as published

University College London (UCL) requires access to NHS England data for the purpose of the following research project: The ENCCA (European Network for Cancer Research in Children and Adolescents The ENCCA (European Network for Cancer Research in Children and Adolescents, www.encca.eu) Network of Excellence aims to accelerate clinical and translational research in paediatric and adolescent oncology and to promote evaluation of and access to innovative therapies. The ENCCA network of 34 partners spans 11 European countries and includes 27 eminent paediatric oncology institutions. ENCCA links all the multinational clinical trial groups and national childhood cancer professional societies across Europe in an ENCCA European Clinical Research Council. It is structured as a consortium that will carry out 18 working packages. Work package 11 aims to establish methods of linkage of the population-based cancer registries with other forms of routine health care data to conduct future research in childhood cancers where the overall population has a good prognosis. Work package 10 aims to develop risk-adapted therapies in solid tumours, mainly neuroblastoma. The work of the ENCCA network, including the European Clinical Research Council, is now continued under the auspices of the SIOP Europe, (European Society for Paediatric Oncology) (https://siope.eu/european-research-and-standards/clinical-research-council/ ). The following is a summary of the aims of the research project provided by…

Expected benefits, as published

The aim of this study is to better understand the outcomes of current treatments for neuroblastoma in infants in relation to the success of first-line therapy (event-free survival) and the burden of treatment received by the individual child and reasons for any differences between countries. Carrying out this research may assist in identifying optimal practice in the clinical care of children with neuroblastoma, and therefore has the potential to benefit the provision of health and social care in England. The international comparative analysis that includes 6 countries (England, France, Germany, Switzerland, Spain, Italy) shows that the proportion of infants diagnosed with stage 4 disease is highest in England. This suggests that we need to focus improvement efforts on earlier diagnosis c…

Benefits reported by the applicant

This project was a demonstrator project within work package 11 of the European Network for Cancer research in Children and Adolescents (ENCCA), a major EU FP7-funded project. It aims to show the value of using routine health care data to understand and monitor outcomes in childhood cancers with very favourable prognosis, for whom clinical trials are not easily funded or widely available. An extensive list of publications published by the European Network for Cancer research in Children and Adolescents (ENCCA), a major EU FP7-funded project which supported this project's set-up, can be found at the following link: http://worldspanmedia.s3.amazonaws.com/media/siope/wp-content/uploads/2013/06/SIOPE-ENCCA-Scientific-Articles.pdf. Information on how the research has so far benefitted the provi…

This is the applicant's own account; OpenHDI has not verified it.

Source: https://digital.nhs.uk/services/data-access-request-service-dars/data-uses-register. Captured 2026-11-05.

Limitations: Data-sharing agreement as published in NHS England's Data Uses Register. An agreement permits access; actual data releases are listed separately. Expected and yielded benefits are as reported by the applicant and have not been independently verified. Long text fields can be cut off in NHS England's spreadsheet export at Excel's 32,767-character cell limit.