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ORPHA:36397

Adiposis dolorosa

high confidenceDisorder

Also known as: Adiposalgia · Adipose tissue rheumatism · Dercum disease · Lipomatosis dolorosa

Publications

600

65.1th percentile

Trials

4

Interventional, condition-specific

Researchers

844

Distinct authors in sample

Gene link

—

Readiness

4/6

Stages with a signal

Clinical definition (Orphanet)

A rare disorder of subcutaneous tissue characterized by the development of painful, adipose tissue with multiple subcutaneous lipomas, in association with overweight or obesity.

How rare: How common this is has not been clearly measured.

Orphanet entry

Cross-references

Joined from Mondo / Orphanet. MeSH labels may enter searches; UMLS / OMIM / NCIT are stored for reference.

Additional Mondo synonyms (6)

Dercum's Disease · Dercum's disease · Neurolipomatosis · adipose tissue rheumatism · adiposis dolorosa · lipomatosis dolorosa

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.”

4/6 stages with a signal

An interventional trial matched this condition name on ClinicalTrials.gov — see trials below.

  1. Gene identifiedNot found

    No GenCC disease–gene assertion in this build

  2. LiteraturePresent

    600 matched papers (166 in last 10 years) Source

  3. Phenotype characterisedPresent

    50 HPO annotations (e.g. Sleep disturbance; Abdominal distention; Arthralgia) Source

  4. Animal modelNot found

    No Alliance genotype “model of” associations via Monarch for these Mondo IDs

  5. Orphan designationPartial

    1 EMA designation (none yet with FDA orphan-indication approval) — e.g. Curcumin E100, Resveratrol Source

  6. Interventional trialPresent

    4 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)

50

Associated phenotypes · MONDO:0007070

  • Sleep disturbance
  • Abdominal distention
  • Arthralgia
  • Depression
  • Chronic pain

Showing 5 of 50 — 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)

1

Designation · no FDA orphan-indication approval yet

  • EMA Curcumin E100, ResveratrolTreatment of Dercum disease · 11/11/2024 · PositiveEMA designation

Sources: FDA OOPD · EMA orphan designations

Open Targets candidates

2

Drugs / clinical candidates · MONDO_0007070

CTD chemicals (MyDisease.info)

1 associated chemical. Therapeutic evidence is listed first when present — not a treatment recommendation.

  • Lidocaine · therapeutic

MyDisease.info · MONDO:0007070

Literature

Is anyone studying this?

600

600 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.

600 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).

166 in the last 10 years · high confidence · 65.1th percentile (publications denominator)

Phrase hits: 600 · MeSH hits: 0

Open Europe PMC search

Who's working on it?

844

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.

  1. 01
    Herbst KL16 papers · 2026

    Department of Medicine, University of California, San Diego, California, USA;

    Papers in Europe PMC
  2. 02
    Brorson H9 papers · 2012

    Plastikkirurgiska kliniken, Universitetssjukhuset MAS, Malmö.

    Papers in Europe PMC
  3. 03
    Hansson E7 papers · 2012

    Department of Clinical Sciences Malmö, Lund University, Plastic and Reconstructive Surgery, Skåne University Hospital , Malmö , Sweden. emma.hansson@med.lu.se

    Papers in Europe PMC
  4. 04
    Svensson H7 papers · 2012
    Papers in Europe PMC
  5. 05
    Vantyghem MC5 papers · 2024

    Inserm U859, service d'endocrinologie et maladies métaboliques, hôpital Huriez, CHRU de Lille, 1, rue Polonovski, 59000 Lille, France. mc-vantyghem@chru-lille.fr

    Papers in Europe PMC
  6. 06
    Jannin A4 papers · 2024

    CHU Lille, Endocrinology, Diabetology and Metabolism, F-59000 Lille, France; Univ. Lille, F-59000 Lille, France.

    Papers in Europe PMC
  7. 07
    Lemaitre M4 papers · 2024

    CHU Lille, Endocrinology, Diabetology and Metabolism, F-59000 Lille, France; Univ. Lille, F-59000 Lille, France. Electronic address: madleen.lemaitre@chru-lille.fr.

    Papers in Europe PMC
  8. 08
    Bonanni I3 papers · 2026

    1st Dermatological Clinic, Azienda USL Toscana Centro, P.O. Piero Palagi, Department of Health Science, University of Florence, 50122 Florence, Italy; (A.V.); (I.B.)

    Papers in Europe PMC
  9. 09
    Caproni M3 papers · 2026

    1st Dermatological Clinic, Azienda USL Toscana Centro, P.O. Piero Palagi, Department of Health Science, University of Florence, 50122 Florence, Italy; (A.V.); (I.B.)

    Papers in Europe PMC
  10. 10
    Chevalier B3 papers · 2021

    CHU Lille, Endocrinology, Diabetology and Metabolism, F-59000 Lille, France; Univ. Lille, F-59000 Lille, France.

    Papers in Europe PMC

Clinical research

Is a treatment being tested?

4

interventional trials for this specific condition

4 interventional trials matched this specific condition name; none in our sample are currently recruiting.

Data as of 11 September 2026

4 interventional trials — more than 77.2% of diseases in the trials denominator have none at all (5501 of 7126; this disease is at the 88.1th percentile).

high confidence · 88.1th percentile (trials denominator)

Recruiting interventional trials

From the matched ClinicalTrials.gov set

4 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

2 observational studies match 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

Open the complete matched search on ClinicalTrials.gov

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 2026-07-29

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 Adiposis dolorosa — check Associations / patient organisations on that page.

India — NPRD

Last verified 2026-07-26

This 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.

"Adiposis dolorosa" OR "Adiposalgia" OR "Adipose tissue rheumatism" OR "Dercum disease" OR "Lipomatosis dolorosa" OR "Dercum's Disease" OR "Neurolipomatosis"

Run this search on Europe PMC

ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):

"Adiposis dolorosa" OR "Adiposalgia" OR "Adipose tissue rheumatism" OR "Dercum disease" OR "Lipomatosis dolorosa" OR "Dercum's Disease" OR "Neurolipomatosis"

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: 4 interventional · 2 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 multi-word and distinctive
  • No synonyms dropped by stoplist
  • No label/synonym collisions with other diseases in this corpus

Ingested 2026-07-26T23:54:23.734Z