The United Kingdom Primary Immunodeficiency Network (UKPIN) is the professional body for UK immunologists, specialist nurses and healthcare/academic scientists who work on primary immunodeficiency (PID). They collaborate closely with BSI, and in particular our Clinical Committee, on joint initiatives in this area. Here, Tomaz Garcia, the Chair of UKPIN tells us more about the organisation and their activities.
UKPIN has the overall aim of advancing care in PID. We are progressing and supporting a range of PID-related activities including the UKPID registry, QPIDS accreditation, guideline development, the UKPIN biennial conference and enhancing communication and collaboration with academic and research initiatives.
The UKPID registry
Members of the UKPIN Steering Committee: Front (L to R): Peter Arkwright, Kimberly Gilmour, Rashmi Jain, Suzanne Elcombe; Rear (L to R): Tomaz Garcez, Ravishankar Sargur, Richard Herriot, David Edgar, Matthew Buckland, Claire Bethune, Sara Marshall
In October 2015 the registry switched to the new European Society for Immunodeficiencies (ESID) structure, which is simpler to use, includes checks to improve data integrity and enables more reliable data to be generated. Currently the registry only collects the Level 1 dataset, which includes basic demographic data, consent details, diagnosis, genetic results and treatment details (immunoglobulin replacement therapy, transplant and gene therapy). In the new design, any entry without a genetic mutation must have the diagnosis validated against the ESID Registry diagnostic criteria and all entries must have the level 1 dataset completed before accepted into the ESID registry. In the new design data are also collected on date and cause of death for deceased patients.
Facts about the UKPID Registry
|No. of centres registered||36|
|No. of patients regsitered||4,057|
|Patients lost to follow up or deceased||329|
|No. of entries validated (Level 1 completed)||1,715|
The level 2 datasets have not yet been finalised by ESID and there is currently no date set for their completion and adoption by the UK registry. Level 2 is disease specific and includes fields such as laboratory results, other diseases, infections and quality of life data. Development and completion of level 2 data will incrementally increase the quality of data and knowledge on outcomes and response to treatment in these very rare conditions.
The UK registry continues to include patients with hereditary angioedema (HAE) and secondary antibody deficiency, although they are no longer included in the ESID registry. The staff supporting the registry, and funded by UKPIN, have been instrumental in ensuring the success of the registry to date.
The UKPIN clinical PID service accreditation scheme has successfully transferred to the Royal College of Physicians (RCP), where it is now known as the Quality in Primary Immunodeficiency Services (QPIDS) scheme. The accreditation standards have had light touch revision and the accreditation pathway has been aligned to the RCP’s methodology. Updates on the status of accreditation and registration can be found on the UKPIN and QPIDS websites. The QPIDS scheme is recognised by the NHS England service specification for specialised immunology, which requires specialist units to be working towards accreditation in order for their services to be commissioned.
The staff supporting the registry and funded by UKPIN, have been instrumental to the success of the registry to date.
The first training day for services registered for accreditation was held in January 2016, with excellent feedback received from delegates. The day will be held regularly, with a further day planned for later in 2016. A total of 22 services have registered for the scheme so far, with seven of these previously accredited under the UKPIN scheme. Registered services are working towards accreditation and we hope to see the first QPIDS accredited service soon.
Biennial conference 2015
The UKPIN biennial conference was held in Belfast in November 2015 and was a great success. The meeting focus was ‘New Entities in Primary Immunodeficiency’, an exploration of how genomic medicine has impacted on discovery in PID and its treatment. There were parallel sessions with an update on new diagnostic tests and helping patients manage long-term conditions. For the first time, patient representatives were hosted within the main meeting space and this was extremely important in networking between all professional groups.
The great debate now a regular feature considered whether genomic medicine would replace functional immunology testing. As always the purpose of this session was to provide lively discussion, and the audience were enthusiastically engaged.
The conference finished with a session that covered the genomic projects currently underway and a final thought provoking talk on how pathogen as well as host genomics is an essential part of ongoing research in understanding the immune–pathogen interface.
Who attended the 2015 conference
197 separate organisations represented
44 healthcare scientists
Videos of sessions, photos and poster abstracts are available for members to view online, including a report by Suzanne Elcombe providing a trainee’s perspective on the meeting.
Biennial conference 2017
The 2017 meeting will take place in Brighton on 7–8 December. This follows immediately after the British Society for Immunology Annual Congress (4–7 December), with a single overlapping day and a joint plenary session. Please save the date. The organising committee is being led by Kimberly Gilmore for UKPIN in collaboration with the BSI.
UKPIN is working with the BSI in the development of clinical guidelines for primary immunodeficiency diseases. Stephen Jolles is leading this initiative for UKPIN in collaboration with the BSI.
The refresh of the UKPIN website has also allowed the creation of an area dedicated to research. The 100 000 genome project is an exciting research development that aims to sequence 100 000 genomes from 70 000 people by the end of 2017. Sophie Hambleton, the Genomics England Clinical Interpretation Partnership (GeCIP) Immune Disorders Lead for UKPIN, has provided UKPIN with a brief summary of the project, which can be accessed via the website.
Become a UKPIN member
Please consider joining the UKPIN membership by following the appropriate links on the UKPIN website. Together we can improve the care of patients with PID.