Registry

The UK is one of the largest documenting centres contributing to the European central (ESID) registry of primary immunodeficiencies.

Established on its own servers in 2009, it has grown to contain information on patients with over 200 different types of primary immunodeficiency and more than 3000 individuals.

View Registry Data by Diagnosis
View Registry Data by Centre

Patients and healthcare professionals share an interest in such a registry which is an essential instrument for high-quality research and ultimately contributes to the improvement of patient care. Another key objective of data collection is to raise public awareness and to strengthen PID's position towards key stakeholders like the media and the government.

The UK PID registry is run by a sub-committee of the UKPIN steering group.

The UKPID Registry is now established on servers based at the Royal Free Campus of University College London (UCL). The data is SSL encrypted and stored on secure servers. Ethical approval has been obtained from the National Research Ethics Service (04/MRE07/68)

Patient data is anonymised and the initial aim to capture core data on all PID patients in the UK has been largely achieved.  Subsequently, long-term documentation of patients is planned with documentation requested at least once a year for each patient.

Over the last year the European and now the UK registry databases have been reorganised to make data entry, retrieval and analysis simpler all to achieve the common goals outlined.  This work has also focussed the effort on improving data quality.

For more detailed information about the registry, please refer to the user guide in the downloads section.

To access the registry, a standard browser, user-name and password is sufficient. Users will only have access to data from their own documenting centre. However, where individuals or centres wish to undertake collaborative projects with other participating centres, the UKPID Registry committee will facilitate that request and assist in establishing agreements for data sharing between centres.

Please feel free to contact Catherine Bangs for more information:

Catherine Bangs
Manchester Royal Infirmary

Tel: 0161 276 6186
Email:
Catherine.bangs@cmft.nhs.uk

Name

Role

Title 
Matthew Buckland Consultant Immunologist  Royal Free & Great Ormond Street Hospitals 
 David Guzman IT Expert UCL Medical School, Royal Free Campus 
 Catherine Bangs Registry Coordinator  Manchester Royal Infirmary 
 Austen Worth  Consultant Paediatric Immunologist  Great Ormond Street Hospital
 Andrew Gennery  Consultant Paediatric Immunologist
Great Ormond Street Hospital 
 Ben Shilitoe Clinical Research Associate/Paediatric Registrar   Institute of Cellular Medecine, Newcastle upon Tyne University
 Sarita Workman Specialist Sister in Immunology Research
 Royal Free Hospital