ORPHA:97332
Kienbock disease
Also known as: Aseptic necrosis of the lunate bone · Lunatomalacia · Osteochondrosis of the lunate bone · Progressive avascular necrosis of the lunate bone
Publications
585
75.7th percentile
Trials
1
Interventional, condition-specific
Researchers
676
Distinct authors in sample
Gene link
—
Readiness
3/6
Stages with a signal
Clinical definition (Orphanet)
Kienbock disease is a rare bone disorder of unknown characterized clinically by osteonecrosis of the carpal lunate, eventually leading to collapse of the lunate bone impacting wrist function.
How rare: 1-9 / 100 000 — about one to nine people per hundred thousand.
Cross-references
Joined from Mondo / Orphanet. MeSH labels may enter searches; UMLS / OMIM / NCIT are stored for reference.
- MONDO:0019967
- UMLS:C0022682
Additional Mondo synonyms (3)
Kienböck Disease · aseptic necrosis of the lunate bone · osteochondritis of the lunate bone
Research stages
Trial readiness signals
Where this condition sits on an open-data research pipeline — not how close a treatment is, and not medical advice. Empty stages often mean “not in these databases under this Mondo ID,” not “impossible.”
3/6 stages with a signal
An interventional trial matched this condition name on ClinicalTrials.gov — see trials below.
- Gene identifiedNot found
No GenCC disease–gene assertion in this build
- LiteraturePresent
585 matched papers (300 in last 10 years) Source
- Phenotype characterisedPresent
7 HPO annotations (e.g. Limitation of joint mobility; Bone pain; Osteoarthritis) Source
- Animal modelNot found
No Alliance genotype “model of” associations via Monarch for these Mondo IDs
- Orphan designationNot found
No FDA or EMA orphan-drug designation matched this disease via UMLS or preferred name Source
- Interventional trialPresent
1 matched on ClinicalTrials.gov
Biology
Genes and phenotypes
Gene–disease validity from GenCC, plus phenotypes and animal models joined from Monarch Initiative via Mondo ID — not a clinical diagnosis aid.
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.
Phenotypes (Monarch / HPO)
7
Associated phenotypes · MONDO:0019967
- Limitation of joint mobility
- Bone pain
- Osteoarthritis
- Avascular necrosis
- Arthralgia
Showing 5 of 7 — open Monarch for the full list.
Animal models (Monarch / Alliance)
None returned for this Mondo ID. Empty here is not proof that no model organism work exists under another name or gene.
Monarch fetch 2026-07-29
Therapies
Designations, candidates, and chemicals
FDA OOPD and EMA orphan designations, Open Targets clinical candidates, and CTD chemical associations via MyDisease.info. These never change the interventional-trial headline.
Orphan designation (FDA · EMA)
No designation matched this disease via UMLS or preferred name on the FDA OOPD mirror or EMA orphan register. Absence here is not proof that none exists under another wording.
Open Targets candidates
No drugs or clinical candidates returned for this Mondo ID on Open Targets.
CTD chemicals (MyDisease.info)
No CTD chemical associations returned for this Mondo ID.
Literature
Is anyone studying this?
585
585 papers have been published on this condition. That is a real research literature — still far smaller than common diseases (breast cancer: over 700,000 papers). Median papers in the last 10 years for a rare disease in this dataset (publications denominator n=3967) is 59.
585 papers since the earliest indexed year in this search — median last-10-year count for a rare disease in this dataset is 59 (publications denominator n=3967).
300 in the last 10 years · medium confidence · 75.7th percentile (publications denominator)
Phrase hits: 585 · MeSH hits: 0
Who's working on it?
676
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.
- 01Afshar A10 papers · 2026
Department of Orthopedics, Imam Khomeini Hospital, Urmia University of Medical Sciences, Urmia, Iran.
Papers in Europe PMC - 02Bain GI8 papers · 2022
Department of Orthopaedic Surgery, Flinders University, Adelaide, South Australia, Australia.
Papers in Europe PMC - 03Lichtman DM8 papers · 2025
Department of Surgery, Uniformed Services University, Bethesda, Maryland.
Papers in Europe PMC - 04Nakamura T8 papers · 2025
Clinical Research Center, International University of Health and Welfare, Tokyo, Japan.
Papers in Europe PMC - 05Higgins JP7 papers · 2025
Curtis National Hand Center, MedStar Union Memorial Hospital, 3333 North Calvert Street, Baltimore, MD 21218, USA. Electronic address: anne.mattson@medstar.net.
Papers in Europe PMC - 06Pientka WF 2nd7 papers · 2025
Department of Orthopaedic Surgery, John Peter Smith Hospital, Fort Worth, Texas.
Papers in Europe PMC - 07Ring D7 papers · 2021
3 Department of Surgery and Perioperative Care, Dell Medical School, The University of Texas at Austin, USA.
Papers in Europe PMC - 08Tabrizi A7 papers · 2026
Department of Orthopedics, Urmia University of Medical Sciences, Imam Khomeini Hospital, Urmia, Iran.
Papers in Europe PMC - 09Moran SL6 papers · 2026
Department of Orthopaedic Surgery, Mayo Clinic, Rochester, MN, United States.
Papers in Europe PMC - 10Kawamura K5 papers · 2026
Department of Tamai Susumu Memorial Limb Trauma Center, Nara Medical University, 840 Shijo-cho, Kashihara, Nara, Japan.
Papers in Europe PMC
Clinical research
Is a treatment being tested?
1
interventional trials for this specific condition
1 interventional trial matched this specific condition name; none in our sample are currently recruiting.
Data as of 11 September 2026
1 interventional trial — more than 77.2% of diseases in the trials denominator have none at all (5501 of 7126; this disease is at the 80.1th percentile).
medium confidence · 80.1th percentile (trials denominator)
Recruiting interventional trials
From the matched ClinicalTrials.gov set
1 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
- NCT06460922·RECRUITING·3D Printing Models in Surgical Planning of Osteotomies in Kienbock´s Disease Stages II-III
Not reviewed·Conditions: Kienbock Disease·Matched via name phrase
Other registries (secondary)
Broader net from EU CTIS, ISRCTN, and ICTRP when available — deduped against ClinicalTrials.gov IDs already counted above. Dual-model LLM relevance gates what we keep. These rows are not added to the interventional headline.
raw 0 · after dedupe 0 · already on CT.gov 0 · kept 0 · parent 0 · uncertain 0 · dropped 0 · fetched 2026-07-30
Source notes: ictrp: Error: ICTRP public search unavailable (WHO portal is SPA-only; SOAP needs partnership). Tried: https://apps.who.int/tri
No secondary-registry studies passed dual-model relevance for this condition name (after dedupe).
Where to find support
Condition-specific patient organisations, when Orphanet lists them, are on the disease’s Orphanet page. We also link umbrella groups that support undiagnosed and ultra-rare families.
Orphanet entry for Kienbock disease — check Associations / patient organisations on that page.
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 on the overview but are not added to the query string.
"Kienbock disease" OR "Aseptic necrosis of the lunate bone" OR "Aseptic necrosis of lunate bone" OR "Lunatomalacia" OR "Osteochondrosis of the lunate bone" OR "Osteochondrosis of lunate bone" OR "Progressive avascular necrosis of the lunate bone" OR "Progressive avascular necrosis of lunate bone" OR "Kienböck Disease" OR "osteochondritis of the lunate bone" OR "osteochondritis of lunate bone"
ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):
"Kienbock disease" OR "Aseptic necrosis of the lunate bone" OR "Aseptic necrosis of lunate bone" OR "Lunatomalacia" OR "Osteochondrosis of the lunate bone" OR "Osteochondrosis of lunate bone" OR "Progressive avascular necrosis of the lunate bone" OR "Progressive avascular necrosis of lunate bone" OR "Kienböck Disease" OR "osteochondritis of the lunate bone" OR "osteochondritis of lunate bone"
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: 1 interventional · 1 observational · 0 expanded access. Only interventional studies enter the trial headline.
Query health: ok — strategies attempted: phrase; with hits: phrase
Run this search on ClinicalTrials.gov
Confidence reasoning
- Preferred label is short or not clearly distinctive
- No synonyms dropped by stoplist
- No label/synonym collisions with other diseases in this corpus
Ingested 2026-07-27T05:10:38.286Z