A population-based comprehensive lymphoma registry

  • Research type

    Research Database

  • IRAS ID

    190514

  • Contact name

    Mark Bishton

  • Contact email

    mark.bishton@nuh.nhs.uk

  • 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