Evidence map›Paper›PMID 27325254›Full record

ArticleNephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association2017

Prevalence of autosomal dominant polycystic kidney disease in the European Union.

Cynthia J Willey, Jaime D Blais, Anthony K Hall, Holly B Krasa, Andrew J Makin, Frank S Czerwiec

Registry-linked trialOpen access · hybridAbstract read
In one paragraph

Article in Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT06594367 (A Possible Founding PKD2 Mutation Associated With Variable Phenotypes of ADPKD in Bergamo Province), which is not on this map. Cited by 143 papers, 7 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
143citing papers in PubMed, 7 pooled it
19.5field-weighted citation impact, top 1% of its field
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.

NCT06594367 completednot on this mapstarted 2025, after this paper: background citation

A Possible Founding PKD2 Mutation Associated With Variable Phenotypes of ADPKD in Bergamo Province

TypeobservationalSponsorMario Negri Institute for Pharmacological ResearchRan2025 to 2025Enrolled10ConditionsAutosomal Dominant Polycystic Kidney Disease (ADPKD)
3 · Its place in the literature

Who cites it

143 citing papers in PubMed, 7 syntheses or guidelines pooled it, 239 citations in OpenAlex.

  1. Pooled it
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  5. Guideline
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  8. Metformin Therapy in Autosomal Dominant Polycystic Kidney Disease: A Feasibility Study.American journal of kidney diseases : the official journal of the National Kidney Foundation · 2022
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83 more citing papers are in PubMed but not listed here.

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

6 authors at 5 institutions in 4 countries.

Cynthia J WilleyCollege of Pharmacy, University of Rhode Island, Kingston, RI, USA.
Jaime D BlaisOtsuka Pharmaceutical Development & Commercialization, Inc., Rockville, MD, USA.
Anthony K HallPSR Group BV, Hoofddorp, The Netherlands.
Holly B KrasaOtsuka Pharmaceutical Development & Commercialization, Inc., Rockville, MD, USA.
Andrew J MakinOtsuka Europe Development and Commercialisation Ltd, Wexham, UK.
Frank S CzerwiecOtsuka Pharmaceutical Development & Commercialization, Inc., Rockville, MD, USA.
Otsuka (United States) · USOtsuka (United Kingdom) · GBPharmaceutical Product Development (United States) · USUniversity of Rhode Island · USWestern Digital (Netherlands) · NL

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundAutosomal dominant polycystic kidney disease (ADPKD) is a leading cause of end-stage renal disease, but estimates of its prevalence vary by >10-fold. The objective of this study was to examine the public health impact of ADPKD in the European Union (EU) by estimating minimum prevalence (point prevalence of known cases) and screening prevalence (minimum prevalence plus cases expected after population-based screening).

methodsA review of the epidemiology literature from January 1980 to February 2015 identified population-based studies that met criteria for methodological quality. These examined large German and British populations, providing direct estimates of minimum prevalence and screening prevalence. In a second approach, patients from the 2012 European Renal Association‒European Dialysis and Transplant Association (ERA-EDTA) Registry and literature-based inflation factors that adjust for disease severity and screening yield were used to estimate prevalence across 19 EU countries (N = 407 million).

resultsPopulation-based studies yielded minimum prevalences of 2.41 and 3.89/10 000, respectively, and corresponding estimates of screening prevalences of 3.3 and 4.6/10 000. A close correspondence existed between estimates in countries where both direct and registry-derived methods were compared, which supports the validity of the registry-based approach. Using the registry-derived method, the minimum prevalence was 3.29/10 000 (95% confidence interval 3.27-3.30), and if ADPKD screening was implemented in all countries, the expected prevalence was 3.96/10 000 (3.94-3.98).

conclusionsERA-EDTA-based prevalence estimates and application of a uniform definition of prevalence to population-based studies consistently indicate that the ADPKD point prevalence is <5/10 000, the threshold for rare disease in the EU.

Indexed as

European UnionEthnicityEuropeHumansKidney TransplantationPolycystic Kidney, Autosomal DominantPrevalenceRegistriesRenal DialysisRenal Replacement Therapyautosomal dominant polycystic kidney diseaseepidemiologyEuropean Unionorphan diseaserare disease

Identifiers

PMID27325254
PMCPMC5837385
OpenAlexW2433595988

What OpenQuestion holds

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Registered trials

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.