Evidence map›Paper›PMID 29878323›Full record

ArticleClinical and experimental immunology2018

The United Kingdom Primary Immune Deficiency (UKPID) registry 2012 to 2017.

B Shillitoe, C Bangs, D Guzman, A R Gennery, H J Longhurst, M Slatter, D M Edgar, M Thomas, A Worth, A Huissoon and 23 more

Abstract read
In one paragraph

Article in Clinical and experimental immunology, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 47 papers, 3 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
47citing papers in PubMed, 3 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

47 citing papers in PubMed, 3 syntheses or guidelines pooled it.

  1. Prevalence and Incidence of Hereditary Angioedema: A Systematic Literature Review.International archives of allergy and immunology · 2026
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

33 authors.

B ShillitoeOn behalf of the UKPIN Registry Committee, UKPIN, London, UK.ORCID 0000-0003-4407-5998
C BangsOn behalf of the UKPIN Registry Committee, UKPIN, London, UK.
D GuzmanOn behalf of the UKPIN Registry Committee, UKPIN, London, UK.
A R GenneryOn behalf of the UKPIN Registry Committee, UKPIN, London, UK.
H J LonghurstAddenbrooke's Hospital, Cambridge Universities NHS Foundation Trust, Cambridge, UK.
M SlatterGreat North Children's Hospital, Newcastle upon Tyne, UK.
D M EdgarThe Royal Hospitals, Belfast, UK.
M ThomasNHS Greater Glasgow and Clyde, Glasgow, UK.
A WorthOn behalf of the UKPIN Registry Committee, UKPIN, London, UK.
A HuissoonHeart of England NHS Foundation Trust, Birmingham, Birmingham, UK.
P D ArkwrightManchester University NHS Foundation Trust, Manchester, UK.ORCID 0000-0002-7411-5375
S JollesUniversity Hospital of Wales, Cardiff, UK.ORCID 0000-0002-7394-6804
H BourneThe Newcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK.
H AlachkarSalford Royal NHS Foundation Trust, Salford, UK.
S SavicLeeds Teaching Hospitals NHS Trust, Leeds, UK.
D S KumararatneAddenbrooke's Hospital, Cambridge Universities NHS Foundation Trust, Cambridge, UK.
S PatelJohn Radcliffe Hospital, Headington, Oxford, UK.ORCID 0000-0002-6207-2208
H BaxendalePapworth NHS Foundation Trust, Cambridge, UK.
S NooraniSandwell and West Birmingham Hospitals NHS Trust, Birmingham, UK.
P F K YongFrimley Health NHS Foundation Trust, Frimley, UK.
C WaruiruSheffield Children's NHS Foundation Trust, Sheffield, UK.
V PavaladuraiLancashire Teaching Hospitals NHS Foundation Trust, Preston, UK.
P KelleherRoyal Brompton and Harefield NHS Foundation Trust, London, UK.
R HerriotNHS Grampian, Aberdeen, UK.
J BernatonienneUniversity Hospitals Bristol NHS Foundation Trust, Bristol, UK.
M BholeThe Dudley Group NHS Foundation Trust, Dudley, UK.
C SteeleNHS Tayside, Dundee, UK.
G HaymanEpsom and St Helier University Hospitals NHS Trust, St Helier, UK.
A RichterUniversity Hospitals Birmingham NHS Foundation Trust, Birmingham, UK.
M GompelsNorth Bristol NHS Trust, Southmead Hospital, Bristol, UK.
C ChopraNHS Lothian, Edinburgh, UK.
T GarcezManchester University NHS Foundation Trust, Manchester, UK.
M BucklandOn behalf of the UKPIN Registry Committee, UKPIN, London, UK.ORCID 0000-0002-5646-4707

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

This is the second report of the United Kingdom Primary Immunodeficiency (UKPID) registry. The registry will be a decade old in 2018 and, as of August 2017, had recruited 4758 patients encompassing 97% of immunology centres within the United Kingdom. This represents a doubling of recruitment into the registry since we reported on 2229 patients included in our first report of 2013. Minimum PID prevalence in the United Kingdom is currently 5·90/100 000 and an average incidence of PID between 1980 and 2000 of 7·6 cases per 100 000 UK live births. Data are presented on the frequency of diseases recorded, disease prevalence, diagnostic delay and treatment modality, including haematopoietic stem cell transplantation (HSCT) and gene therapy. The registry provides valuable information to clinicians, researchers, service commissioners and industry alike on PID within the United Kingdom, which may not otherwise be available without the existence of a well-established registry.

Indexed as

Epidemiological MonitoringFemaleHumansImmunologic Deficiency SyndromesMaleRegistriesUnited Kingdomautoimmunityautoinflammatory diseasehumanimmunodeficiency diseasestransplantation

Identifiers

PMID29878323
PMCPMC5980391

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.