ORPHA:97363
Unilateral multicystic dysplastic kidney
Also known as: Unilateral MCDK · Unilateral multicystic renal dysplasia
Clinical definition (Orphanet)
A rare form of multicystic dysplastic kidney (MCDK), a anomaly of the kidney and urinary tract (CAKUT), in which one kidney is large, distended by multiple cysts, and non-functional.
How rare: 1-5 / 10 000 — about one to five people per ten thousand (still uncommon, but less ultra-rare).
Is anyone studying this?
308
308 papers have ever been published on this condition (under this name). For scale, breast cancer has over 700,000. Median papers in the last 10 years for a rare disease in this dataset (publications denominator n=183) is 38.
308 papers since the earliest indexed year in this search — median last-10-year count for a rare disease in this dataset is 38 (publications denominator n=183).
148 in the last 10 years · high confidence · 75.7th percentile (publications denominator)
Is a treatment being tested?
3
trials for this specific condition
3 interventional trials matched this specific condition name; none in our sample are currently recruiting. 2 trials are registered for multicystic dysplastic kidney, the broader category — shown separately because they may or may not enrol this specific subtype.
Data as of 26 July 2026
2
trials for multicystic dysplastic kidney, the broader category this belongs to
Trials registered for a broader category may or may not enrol people with this specific subtype — eligibility criteria vary, and the trial record often doesn't say. Worth raising with a clinician. How we count trials.
3 interventional trials — more than 59.2% of diseases in the trials denominator have none at all (151 of 255; this disease is at the 79.4th percentile).
high confidence · 79.4th percentile (trials denominator)
Do we know what causes it?
Not yet — the cause hasn't been pinned down in GenCC.
No strong gene–disease assertion joined for this Orphanet entity.
Who's working on it?
1,191
Distinct author names in 200 sampled papers — named people below.
Who's working on it?
People publishing on this condition (sampled Europe PMC records). Affiliation is the most recent found in that sample.
- 01Haffner D4 papers · 2025
Department of Pediatric Kidney, Liver and Metabolic Diseases, Hannover Medical School, Hannover, Germany.
Papers in Europe PMC - 02Briggs DC3 papers · 2026
Department of Paediatrics and Child Health, Red Cross War Memorial Children's Hospital, University of Cape Town, Cape Town, South Africa. datonye.briggs1@rsu.edu.ng.
Papers in Europe PMC - 03Brink A3 papers · 2026
Department of Nuclear Medicine Sciences Applications, Division of Human Health, Nuclear Medicine and Diagnostic Imaging Section, International Atomic Energy Agency, Vienna, Austria.
Papers in Europe PMC - 04Canning DA3 papers · 2020Papers in Europe PMC
- 05Christians A3 papers · 2025
Department of Human Genetics OE 6300, Hannover Medical School, Carl-Neuberg-Str. 1, 30625, Hannover, Germany.
Papers in Europe PMC - 06Coetzee A3 papers · 2026
Department of Paediatrics and Child Health, Red Cross War Memorial Children's Hospital, University of Cape Town, Cape Town, South Africa.
Papers in Europe PMC - 07Geffers R3 papers · 2025
Genome Analytics Research Group, Helmholtz Centre for Infection Research, Brunswick, Germany.
Papers in Europe PMC - 08Hennies I3 papers · 2025
Department of Pediatric Kidney, Liver and Metabolic Diseases, Hannover Medical School, Hannover, Germany.
Papers in Europe PMC - 09Hlongwa K3 papers · 2026
Department of Nuclear Medicine, Red Cross War Memorial Children's Hospital, University of Cape Town, Cape Town, South Africa.
Papers in Europe PMC - 10John U3 papers · 2001
Division of Paediatric Nephrology, University Children's Hospital, Jena, Germany.
Papers in Europe PMC
Recruiting interventional trials
Trials testing a treatment from the matched ClinicalTrials.gov set
3 interventional trials matched after quoted-phrase search and title/condition post-filter.
No currently recruiting studies in the matched set. Open the same search on ClinicalTrials.gov.
Observational and natural-history studies
1 observational study matches this condition. These do not test a treatment and are not counted in the interventional-trial headline, but they are genuine research: natural-history work often defines the endpoints needed for a future rare-disease trial, and families may be able to enroll.
Recruiting or not-yet-recruiting
Where to find support
We do not yet link condition-specific patient organisations. These umbrella groups support undiagnosed and ultra-rare families:
India — NPRD
Last verified 2026-07-26This ORPHAcode is not on our curated NPRD list (direct or Mondo-parent match). That does not decide clinical eligibility; families in India should ask a notified Centre of Excellence about current coverage.
Hand-curated for this project. ORPHAcode mappings are best-effort and may be incomplete or imprecise for umbrella categories. Parent (Mondo) matches mean the policy lists a broader category — confirm eligibility with a Centre of Excellence. Financial entitlements summarised from public policy statements and may change. This is not official government guidance.
How we counted this
Europe PMC query (preferred label + any corrected label + Orphanet and Mondo exact synonyms, stoplisted; unioned with resolved MeSH labels when available). UMLS / OMIM / NCIT cross-references are stored below but are not added to the query string.
"Unilateral multicystic dysplastic kidney" OR "Unilateral MCDK" OR "Unilateral multicystic renal dysplasia"
ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):
"Unilateral multicystic dysplastic kidney" OR "Unilateral MCDK" OR "Unilateral multicystic renal dysplasia" OR "cystic kidney disease"
Interventional trials matched via: phrase (mesh = registered under a MeSH descriptor no name phrase would catch; recall-expansion = gene / selected parent terms used only for trials).
Study-type breakdown: 3 interventional · 1 observational · 0 expanded access. Only interventional studies enter the trial headline.
Cross-references (from Mondo): UMLS:C1567426
Query health: ok — strategies attempted: phrase, recall-expansion; with hits: phrase, recall-expansion
Run this search on ClinicalTrials.gov
Confidence reasoning
- Preferred label is multi-word and distinctive
- No synonyms dropped by stoplist
- No label/synonym collisions with other diseases in this corpus