West Midlands Research Consortium

At least 16 centres are collaborating as part of the WMRC, including:

• The Royal Wolverhampton NHS Trust (RWT)
• University Hospitals Birmingham NHS Foundation Trust (QEHB)
• University Hospitals of North Midlands NHS Trust (UHNM)
• University Hospitals Coventry & Warwickshire (UHCW)
• George Elliot Hospital (GEH)
• Warwick Hospital (South Warwickshire University NHS Foundation Trust (SWFT)
• Shrewsbury and Telford NHS Trust (SATH)
• The Dudley Group NHS Foundation Trust (DGFT)
• Sandwell and West Birmingham NHS Trust (SWBH)
• Worcestershire Acute Hospitals NHS Trust (WAHT)
• Northern Care Alliance NHS Foundation Trust (NCA)
• Nottingham University Hospitals NHS Trust (NUH)
• Leeds Teaching Hospitals NHS Trust (LTHT)
• University Hospitals of Derby and Burton NHS Foundation Trust (UHDB)
• Betsi Cadwaladr University Local Health Board (BCUHB)
• Beatson West of Scotland Cancer Centre – NHS Greater Glasgow and Clyde (BWoSCC)

If you have a potential project and you wish to discuss your requirements with the WMRC, or you would like to be a member of the WMRC, please contact Emma Weaver, WMRC Project Manager, on 07990 524612 or via email at rwh-tr.wmrcprojects@nhs.net.

If you are a patient wanting more information, please liaise with your local clinician.

The West Midlands Research Collaborative Haematology Database, known as the WMRC RDB, aims to make better use of patient health data captured in NHS records from centres across the West Midlands and beyond by collating it in a single data store.

Such data collection will be guided by the need for real world evidence (RWE) to answer important questions within Haematology.

RWE is important as it can:

• provide healthcare quality improvement
• generate hypotheses for future research
• inform regulators on patterns of medical use and clinicians on practice patterns
• demonstrate value
• look at risk‐benefit assessments with supplementing clinical trial data

RWE benefits patients as it applies to those outside of the clinical trial setting and answers important questions around the management of haematology patients.

The RDB received Ethical approval (23/SC/0174) in 2023 and data sharing agreements are in place with WMRC centres.

It is ever evolving and can collect routine, retrospective, pseudo-anonymised patient data for any haematological condition via the direct care teams at WMRC collaborating centres

Data collection is completed/prioritised in phases and could include the following fields (although this is not an exhaustive list):

1. sex
2. age (to nearest year)
3. diagnosis
4. grade
5. stage
6. ECOG performance status
7. laboratory parameters
8. investigation results, including haematological, biochemical, immunological, flow cytometry, histology, cytogenetics and molecular analyses, co-morbidities, symptoms, treatments including procedures, chemotherapy and medicines, treatment response, progression and date of progression, date of last follow-up and cause of death

All adult patients (18 and over) seen by clinical haematology, diagnosed with a haematological condition or haematological abnormality at any of the WMRC collaborating sites, may have data collected and added to the WMRC RDB unless they have registered for the national NHS data opt-out.

The WMRC RDB enables targeted data collection from a diverse population via experienced clinicians. Clinicians working with the WMRC have a wealth of experience and we keep a record of all their CVs and GCP certificates to evidence this. Our clinicians are committed and accessible for advice when needed.

The WMRC is hosted by RWT. The Trust is also the host for the West Midlands Research Delivery Network (WMRDN) and has significant research experience. RWT is sponsor for the WMRC RDB, has been established as a research sponsor for many years, and has standard operating procedures embedded in relation to sponsorship and study conduct.

WMRC RDB data is either entered directly into a secure electronic data capture system at the WMRC centre or on to an Excel log/questionnaire which will then be sent to RWT for entry into the database via NHS secure email. Patient identifiers are kept with the direct care team at WMRC NHS centres, ensuring only pseudonymised data is captured in the database. This is explained in the Privacy Statement. Please be assured data protection is very important to us and we will be monitored for our compliance.

All WMRC centres are NHS sites with policies in place for data recovery and use accredited cyber security systems. NHS staff are trained in Data Protection and Information Governance.

The WMRC meets regularly and assesses all requests for data from the WMRC RDB to ensure any data sharing will add to the body of evidence for understanding and treatment of patients with haematological conditions, and that WMRC standards and expectations are met.

The HRA website provide more general information about research databases Research tissue banks and research databases – Health Research Authority and Research Database Conditions of REC Favourable Opinion – Health Research Authority

WMRC RDB can be accessed by but not limited to the following:

• Higher education institutions
• NHS organisations
• Health and social care organisations
• Charities
• Innovation companies
• Pharmaceutical companies

Anyone wishing to access the WMRC RDB will need to complete an application form and contact the WMRC Project Manager to discuss the following:

• Information about their data needs. Depending on the project a full research proposal may be required or just an outline of why they would like to receive data with a list of the data fields required
• The team who will be involved including roles, experience and contact details
• Information on how the WMRC data will be used, stored, transferred, archived, and destroyed. An understanding of why the data is required.
• Funding requirements
• If the project is Research, details of sponsorship/peer review/regulatory approvals/planned analysis and publication would be needed

Agreements would be required to stipulate the conditions of the WMRC RDB data use. These can vary in complexity.

Sometimes questionnaires may be needed with collaborators external to the WMRC to ensure they are aligned to WMRC standards and expectations.

Annual and end of study reports will be required.

WMRC RDB projects

WMRC RDB projects must be amenable to using routine, retrospective, pseudo-anonymised haematological patient data held at WMRC collaborating centres. They could include:

• A research project conducted and sponsored by the WMRC with support from external partners where analysed results (Real World Evidence) can be shared
• A collaboration where WMRC data (Real World Data) can be provided for a research project external to the WMRC
• Non research projects are also possible e.g. audits or service evaluations

Other WMRC projects

The WMRC can also work together on other projects not related to the WMCR RDB.

For example, if a project requires prospective information or contact with patients to complete surveys or collect samples then these projects fall outside the remit of the WMRC RDB but can still be coordinated within the consortium.