Data we collect

Data collection within HMRN is heavily predicated on the framework of the UK National Health Service (NHS).

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Laboratory data

HMDS provides a fully integrated diagnostic pathway in a single department, bringing together the relevant technology and expertise (histology, cytology, immunophenotyping, molecular cytogenetics, mutational analysis, flow cytometry and gene expression profiling) required for the diagnosis and ongoing monitoring of haematological malignancies. Within this internationally recognized haematopathology laboratory, all diagnoses, including disease progressions and transformations, are made and coded by clinical staff using the latest WHO classification for tumours of the haematopoietic and lymphoid tissue – the latest version of which is incorporated into the current version of the International Classification of Diseases for Oncology (ICD-O-3).

Activity in HMDS is aided by a sophisticated custom-designed web database that logs and tracks all samples, linking together those that belong to the same individual. Results of all diagnostic and prognostic tests are recorded, and the system automatically generates summary reports for multi-disciplinary team (MDT) meetings and individual clinical consultations.

Clinical data

Following diagnosis, clinical data are regularly extracted from medical records and electronic systems at each of the 14 participating hospitals in the HMRN region. The nature of the information collected varies from one disorder to another. For more detail, click on the links below.

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National health data

HMRN operates with Section 251 support under the NHS Act 2006, enabling the Health and Social Care Information Centre (HSCIC) to provide nationwide information on deaths, cancer registrations (preceding and succeeding), and Hospital Episode Statistics (HES) for all patients. In addition, area-based population data and characteristics, including measures of socio-economic deprivation and urban/rural status, are routinely obtained from the UK census and other national sources.

Information from patients

HMRN collects a vast amount of self-reported information from patients. Initially, adults (aged ≥18) from all diagnostic groups are contacted soon after diagnosis (with permission from their clinical team) and asked if they would be willing to complete a number of questionnaires. The first, which was specifically developed for the study, asks for general information about patient characteristics (including height, weight, smoking, comorbidities) as well as symptoms and events in the time leading to diagnosis. Patients are also invited to use this form to report any other information they think is important about their experiences of being diagnosed and treated for a haematological malignancy; this information contributes to the development of future HMRN-based studies. A second questionnaire (the EQ-5D) is used to collect information about quality of life; this is sent out to patients at diagnosis, six-months post-diagnosis and annually thereafter.

In addition, HMRN has a well-established Patient Partnership which was set up in 2009. This has over 800 members and is overseen by a steering committee of patients and relatives / carers, doctors and nurses, haematology / cancer user group leads and HMRN researchers. This committee ensures that the interests of patient and carers are at the heart of HMRN and that this is reflected in all our research practices. The committee periodically writes to newly diagnosed patients and asks them to become members of the Patient Partnership, and those that agree are invited to take part in additional research activities embedded within HMRN. This may involve completing further questionnaires, taking part in focus groups or commenting on our literature and / or websites. Patients and their relatives / carers also have the opportunity to become further involved in shaping HMRN research by working alongside the research team to develop new research projects.

Where next?

Projects

What individual projects are happening within HMRN?

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Write to us

Haematological Malignancy Research Network
Epidemiology & Cancer Statistics Group
Department of Health Sciences
Area 3
Seebohm Rowntree Building
YORK
YO10 5DD

I understand that, in accordance with the Data Protection Act 1998, by logging into this site I agree that:

  1. The data must not be published or shared with other third parties outside of the Network without first obtaining permission from the Network Audit Haematology Group.
  2. No attempt will be made to identify individual patients or to contact them and confidentiality of information will be preserved at all times.
  3. I am currently employed by an NHS trust operating in the area of the combined Yorkshire and Humber and Yorkshire Coast Cancer Networks.
  4. Any public domain reports or papers resulting from analyses of the provided data will be shared with HMRN prior to publication and appropriate acknowledgement given.