UKCHART

Currently, there are 20 collaborating centres as part of UKCHART, with more joining:

• The Royal Wolverhampton NHS Trust (RWT)
• University Hospitals Birmingham NHS Foundation Trust (QEHB)
• University Hospitals of North Midlands NHS Trust (UHNM)
• 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)
• Oxford University Hospitals NHS Foundation Trust (OUH)
• Guys and St Thomas NHS foundation Trust (GST)
• Cardiff and Vale University Health Board (CVUHB)
• East Suffolk and North Essex NHS Foundation Trust (ESNEFT)
• Royal Berkshire NHS Foundation Trust
• Walsall NHS Trust

If you have a potential project and you wish to discuss your requirements with UKCHART, or you would like to be a member of UKCHART, please contact Tanweer or Jen (UKCHART Project Managers), via email at rwh-tr.ukchart@nhs.net.

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

The UKCHART Haematology Database, known as the UKCHART RDB, aims to make better use of patient health data captured in NHS records from centres across the UK 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 UKCHART centres.

It is ever evolving and can collect routine, retrospective, pseudo-anonymised patient data for any haematological condition via the direct care teams at UKCHART 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 UKCHART collaborating sites, may have data collected and added to the UKCHART RDB unless they have registered for the national NHS data opt-out (opens in new window).

The UKCHART RDB enables targeted data collection from a diverse population via experienced clinicians. Clinicians working with the UKCHART 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 UKCHART is hosted by RWT. RWT is sponsor for the UKCHART RDB, has been established as a research sponsor for many years, and has standard operating procedures embedded in relation to sponsorship and study conduct.

UKCHART RDB data is either entered directly into a secure electronic data capture system at the UKCHART 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 UKCHART 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 UKCHART 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 UKCHART meets regularly and assesses all requests for data from the UKCHART RDB to ensure any data sharing will add to the body of evidence for understanding and treatment of patients with haematological conditions, and that UKCHART 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

UKCHART 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 UKCHART RDB will need to complete an application form and contact the UKCHART 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 UKCHART 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 UKCHART RDB data use. These can vary in complexity.

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

Annual and end of study reports will be required.

UKCHART RDB projects

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

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

Other UKCHART projects

UKCHART can also work together on other projects not related to the UKCHART 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 UKCHART RDB but can still be coordinated within the consortium.