Cancer registry-wide study in infants with neuroblastoma
Research type
Research Study
Full title
Cancer registry-wide study in infants with neuroblastoma Task 11.4 of the ENCCA Network of Excellence (ESF on 29 September 2014)
IRAS ID
179238
Contact name
Kathy Pritchard-Jones
Contact email
Sponsor organisation
Great Ormond Street Hospital for Children NHS Foundation Trust & The UCL Institute of Child Health
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
We diagnose 100 new patients with neuroblastoma each year in the UK and about 25% will be infants. The current cancer registration holds only the details on diagnosis and staging and outcome i.e alive or dead. The patient identifier details already exists in the National Cancer Registry.The main purpose is to collect data on diagnosis, tumour characteristics including histology and biology, treatment, follow-up and outcome (short-term and death and late effects of treatment) of infants (aged 0 - 12 months) with neuroblastoma (NBL) diagnosed in England from the beginning of 1999 to the end of 2014 into the National Cancer Registration system based in Oxford.
Data will be compiled from existing data repositories under previously given consent and as part of future clinical and basic science studies. No data will be sought directly from patients, only via contributing studies.
This work will be conducted in tandem between the cancer registry and the local clinical team involved in the patient care. The collated data will then be released in an anonymised way to the researcher for further analysis.
Please see attached data variables PDFREC name
South West - Cornwall & Plymouth Research Ethics Committee
REC reference
15/SW/0322
Date of REC Opinion
30 Oct 2015
REC opinion
Favourable Opinion