Clinical databases and registers

Introduction

As well as our wider support to clinical audits, HQIP offers support to clinical databases and registers on behalf of the Department of Health.

Clinicians in those disciplines covered by such specialist databases know these databases have considerable value for commissioning, service planning and public health, as well as clinical care.  Registers are often the lifeblood of clinical knowledge in these areas, alongside audit and research. They are often rated highly as part of the network of information sources by National Clinical Directors and the Department of Health. They are usually supported by specialist societies and royal colleges, although these registers have typically been set up by either an individual clinician or a group of committed specialists in their disciplines.

They detail care provided for their client groups, the incidence and outcome of specific conditions and procedures, and organisational responses and treatments provided for specific conditions. They often gather information on clinical outcomes of patients, and form sources for audit and research into the causes of variance in outcomes and other research projects.  They do not usually measure performance against standards, nor do they necessarily drive improvements in an explicit way, yet some have strongly ‘audit like' features, or can be developed into clinical audits.  

HQIP's support takes these forms:

  • The compilation and maintenance of a directory of clinical databases and registers
  • The commissioning of certain databases and advice to others on how they should be commissioned
  • Advice to databases and those setting them up
  • A small amount of funding to support registers
  • HQIP is exploring the feasibility of setting up of other device based registers (akin to the National Joint Registry or NJR) where the cost could be met by levy, or met by manufacturers, rather than public funds.

HQIP welcomes discussions with anyone interested in any of the above. Please contact update.directory@hqip.org.uk

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Directory of Clinical Databases and Registers

In 2011, HQIP mapped clinical databases and registers in the UK and the fifth edition (January 2014) can be found here: HQIP Directory of Clinical Databases and Registers.

This directory is updated on an ongoing basis - to submit details, just complete and return the simple questionnaire with basic details of any relevant project.

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Funding

In 2011 HQIP made available a small amount of funding to support the continuance or development of registers and clinical databases. We are pleased to announce that following the first round of proposals awards have been made to the following projects:

  • Database of Alkaptonuria Patients (AKU) AKU Society
  • National Patient Registration of Patients with Bisphosphonate Related Osteonecrotic Jaw (BRONJ) British Association of Oral & Maxillofacial Surgeons
  • British Thoracic Society Interstitial Lung Disease Registry (BTS ILD) British Thoracic Society
  • Child and Adolescent Psychiatry Surveillance System (CAPSS) Royal College of Psychiatrists
  • Clinical Database for Cluster Headache British Association for the Study of Headache
  • North of England Collaborative Cerebral Palsy Survey (NECCPS) Durham University
  • Sudden Arrhythmic Death Syndrome Proposal (SADS) NHS Information Centre for Health and Social Care
  • Clinical and Laboratory Online Patient & Research Database for Primary Immunodeficiencies (UKPID) UK Primary Immunodeficiencies Network

To find out more about these projects, please download HQIP's Directory of Clinical Databases and Registers for a description of each register or database along with full project contact details if you'd like to make specific enquiries.

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Benefits

The benefits from HQIP's support to registers is:

  • helping support their continuance
  • offer support for better data
  • better control of existing departmental support for these registers through advice and improvement of their practice, commissioning and contracting support for selected registers
  • greater likelihood that such registers can develop into audits in the future
  • improvement of a useful source of data to measure and monitor outcomes and drive quality improvement amongst clinicians
  • better ability to network
  • wider dissemination of results

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International registry and database support

Internationally, support available for the development of registers and databases from the United States via the Agency for Healthcare Research and Quality's 'Registries for Evaluating Patient Outcomes: A User's Guide, 2nd edition'; and in Australia from the Commission for Safety and Quality in Healthcare at: http://www.safetyandquality.gov.au/internet/safety/publishing.nsf/Content/PriorityProgram-08_clinical3

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