NIHR Health Informatics Collaborative - Myeloma Database
Research type
Research Database
IRAS ID
310036
Contact name
Louise English
Contact email
Research summary
NIHR Health Informatics Collaborative - Myeloma Database
REC name
East Midlands - Derby Research Ethics Committee
REC reference
22/EM/0001
Date of REC Opinion
10 Jan 2022
REC opinion
Favourable Opinion
Data collection arrangements
The database will include all patients from participating organisations with a multiple myeloma or other related conditions. The data will include routinely collected clinical data that is directly or indirectly related to Myeloma and some demographics (including age, gender, ethnicity, occupation and deprivation scores).
Data are collected from primary clinical systems within each collaborating organisation. Data in the primary clinical systems are processed in accordance with each trust’s clinical guidelines and subject to local quality and governance procedures. Primary clinical systems in each of the trusts differ and processes for extraction and transformation will vary. All data processing prior to the de-identification process will be done within the secure infrastructure of participating sites. The data are de-identified locally prior to transfer to the research database.
The anonymised patient data collected by the NIHR HIC Myeloma theme are stored securely using a trusted research environment (TRE), the University College London (UCL) Data Safe Haven (DSH), with an agreed set of administrative procedures that meet the requirements of the NHS Data Security and Protection Toolkit and are independently certified to ISO27001.Research programme
Multiple myeloma is a form of blood cancer which is responsible for approximately 2% of cancers in the UK. The incidence of myeloma increases with age with the average age of diagnosis being 77. It is currently incurable although there have been significant improvements in outcomes over the last decade due to more effective treatments, resulting in a longer life expectancy. This NIHR HIC theme is focusing on collecting real world data from people living with myeloma in the UK. Data collected will include baseline patient features, diagnostic practices and treatment regimens, in addition to other factors that may have an impact on overall outcomes and well-being. Collecting real world data is becoming increasingly important in many key areas of cancer care. Examples of this may include reviewing the overall provision of care for this patient population, providing real world data to benchmark newer drugs against which may be helpful when assessing these for NHS funding and access to clinical trials. This theme has been established with the support of Myeloma UK, the national charity for patients in the UK living with myeloma, who understand the vital role real-world data has in improving outcomes in addition to ensuring the patient perspective is represented. . The NIHR HIC Myeloma theme team will develop a research database of in effect anonymised real world data to be used as a resource by approved researchers, academics and medical professionals working within the myeloma community for the benefit of patients living with myeloma in the UK. Full ethical approval will be sought as part of the project.
Research database title
NIHR Health Informatics Collaborative - Myeloma Database
Establishment organisation
University College London Hospitals NHS Foundation Trust
Establishment organisation address
250 Euston Road
London
NW1 2PG