A population-based comprehensive lymphoma registry
Research type
Research Database
IRAS ID
190514
Contact name
Mark Bishton
Contact email
Research summary
A population-based lymphoma dataset registry
REC name
East Midlands - Leicester South Research Ethics Committee
REC reference
20/EM/0105
Date of REC Opinion
1 May 2020
REC opinion
Further Information Favourable Opinion
Data collection arrangements
All new lymphoma diagnoses are required to be discussed and recorded within a MDT. A data manager will move between Hospitals and use MDT records to identify patients. Data will be uploaded directly from each site to a secure ‘cloud’ based database. Each patient would be given a unique number so only that they can only be identified by their own hospital and not others.
Data collected will include:
A. Background information:
Age at diagnosis, sex, ethnicity, body mass index, co-morbidities, smoking status, and past medical history
B. Diagnostic data:
Detailed information on the diagnostic tissue, results of scans, and prognostic scores for lymphoma if used.
Apologies for this oversight. The text for the two sections of A33 is as follows:
Data to be stored and data collection arrangements (maximum 200 words):
All new lymphoma diagnoses are required to be discussed and recorded within a MDT. A data manager will move between Hospitals and use MDT records to identify patients. Data will be uploaded directly from each site to a secure ‘cloud’ based database. Each patient would be given a unique number so only that they can only be identified by their own hospital and not others.
Data collected will include:
A. Background information:
Age at diagnosis, sex, ethnicity, body mass index, co-morbidities, smoking status, and past medical history
B. Diagnostic data:
Detailed information on the diagnostic tissue, results of scans, and prognostic scores for lymphoma if used.
C. Treatment data:
All therapy including type and dates of treatment, including chemotherapy, immunotherapy, radiotherapy and bone marrow transplantation.
D. Follow up data
The response to each therapy, the time spent in remission for each therapy and overall survival.Research programme
The Lymphoma Registry will prospectively collect patient-, disease-, and therapy-, specific data for all patients with newly diagnosed lymphoma in contributing NHS Trusts. The incidence of lymphoma is rising faster than any other common cancer and there is increasing awareness of the complex molecular abnormalities driving these diseases, permitting rapid therapeutic advances. However, the absence of large, high-quality population-based datasets remains a clear area of unmet research need within the UK. We envisage this database as a pioneering effort in the UK to better catalogue and understand lymphomas on a very large scale. Large volume, population-based, ‘real world’ data will allow accurate descriptions of natural history and clinical outcomes, with sufficient follow-up duration to allow identification of unmet clinical need and significantly enhance the quality of data available for research.
Research database title
A population-based lymphoma dataset registry
Establishment organisation
Nottingham University Hospitals NHS Trust
Establishment organisation address
City Hospital campus
Hucknall Road
Nottingham
NG5 1PB