Evidence map›Paper›PMID 41137724›Full record

ReviewNephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association2026

From data to drug: the translational impact of RaDaR, the UK national registry of rare kidney diseases.

Daniel P Gale

Abstract readReview
In one paragraph

Review in Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–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

1 citing paper in PubMed.

  1. Review
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

1 author.

Daniel P GaleUCL Department of Renal Medicine, Royal Free Hospital, London, UK.ORCID 0000-0002-9170-1579

Funding

Kidney Care UKKidney Research UKMedical Research CouncilPolycystic Kidney Disease CharityUK Kidney Association
6 · The paper itself

Abstract

Each rare kidney disease affects relatively few individuals, but collectively these disorders place a significant burden on patients, families, healthcare systems and society. Historically, therapeutic development has been limited by diagnostic challenges, small and underpowered trials, and a lack of disease-specific, clinically meaningful endpoints acceptable to regulators. The UK National Registry of Rare Kidney Diseases (RaDaR) was launched in 2010 to address these challenges by capturing high-quality longitudinal data. With over 37 000 participants enrolled across more than 100 UK sites, RaDaR now functions as a nationally integrated research platform supporting epidemiological studies, biomarker and genomic research, clinical trial feasibility and recruitment, patient-reported experience studies, and health economic evaluations. RaDaR's infrastructure and stakeholder engagement have advanced understanding of disease natural history and surrogate endpoints, and have informed trial design. Analyses from RaDaR have helped quantify progression risk in immunoglobulin A nephropathy and other glomerulopathies, supporting proteinuria reduction as a surrogate endpoint for regulatory approval. RaDaR data have informed National Institute for Health and Care Excellence (NICE) appraisals and supported clinical trials targeting specific molecular subgroups. By integrating clinical, laboratory and hospital episode data, and by maintaining sustained patient engagement, RaDaR enables research that is both scalable and patient-centred. Its role in trials for focal segmental glomerulosclerosis, Alport syndrome and C3 glomerulopathy exemplifies its contribution to precision nephrology. For the rarest conditions, international collaboration remains essential to achieve adequately powered datasets and harmonized endpoints. RaDaR demonstrates how a national registry can bridge the gap between real-world data and therapeutic development, accelerating the path from disease understanding to drug approval in rare kidney disease.

Indexed as

Kidney DiseasesRare DiseasesRegistriesTranslational Research, BiomedicalHumansUnited Kingdomclinical trialspatient registryrare kidney diseasereal-world datasurrogate endpoints

Identifiers

PMID41137724
PMCPMC13130946

What OpenQuestion holds

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LicenceCC BY
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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.