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The UK Primary Immune Deficiency Registry: UKPID Registry

In the UK like in several other countries the necessity for a National PID Registry has become more and more apparent over the years. 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 and its establishment has been supported by generous funding from the Primary Immunodeficiency Association (PIA). It is based on the IT platform of the European Society for Immune Deficiency (ESID) online database and where appropriate consent has been obtained, data can be shared between the two systems. 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 is to capture core data on all PID patients in the UK. Subsequently, long-term documentation of patients is planned with documentation requested at least once a year for each patient. There are over 200 different types of primary immunodeficiencies (PID), grouped into seven different categories, the registry is structured accordingly. Each major PID has its own sub-registry and further development of these is ongoing. Each patient is documented in the sub-registry of his (main) disease.

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

The the UKPID registry is part-funded by the Healthcare Quality Improvement Partnership (Registered Charity Number: 1127049).

Healthcare Quality Improvement Partnership

 


UKPIN is sponsored by Baxter, Biotest, BPL, CSL Behring, Grifols, Octapharma, and Shire.