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ORPHA:2942

Postpoliomyelitis syndrome

low confidenceDisorder

Also known as: Postpolio syndrome · Postpoliomyelitic syndrome

Publications

2,005

Trials

20

Interventional, condition-specific

Researchers

813

Distinct authors in sample

Gene link

—

Readiness

4/6

Stages with a signal

Clinical definition (Orphanet)

Postpoliomyelitis syndrome (PPS) is a neurologic disorder characterized by the development of new neuromuscular symptoms such as muscular weakness or abnormal muscle fatigability occurring in survivors of the acute paralytic form of poliomyelitis, 15-40 years after recovery from the disease, and that is unexplained by other medical causes. Other manifestations that can occur gradually include generalized fatigue, muscle atrophy, muscle and joint pain, intolerance to cold, and difficulties sleeping, swallowing or breathing.

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)

Post Polio Syndrome · postpolio sequelae · postpolio syndrome · postpoliomyelitic syndrome · postpoliomyelitis sequelae · postpoliomyelitis syndrome

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

    2,005 matched papers (734 in last 10 years) Source

  3. Phenotype characterisedPresent

    19 HPO annotations (e.g. Sleep disturbance; Fasciculations; Skeletal muscle atrophy) Source

  4. Animal modelNot found

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

  5. Orphan designationPresent

    1 FDA designation (1 FDA orphan-indication approval) — e.g. Recombinant human insulin-like growth factor-I Source

  6. Interventional trialPresent

    20 matched on ClinicalTrials.gov (2 recruiting in sample)

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)

19

Associated phenotypes · MONDO:0017416

  • Sleep disturbance
  • Fasciculations
  • Skeletal muscle atrophy
  • Muscle spasm
  • Hypoventilation

Showing 5 of 19 — 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 · 1 with FDA orphan-indication approval

  • FDA Recombinant human insulin-like growth factor-IPost-Poliomyelitis Syndrome · 1995-10-13 · Not FDA Approved for Orphan Indication

Sources: FDA OOPD · EMA orphan designations

Open Targets candidates

6

Drugs / clinical candidates · MONDO_0017416

CTD chemicals (MyDisease.info)

No CTD chemical associations returned for this Mondo ID.

Literature

Is anyone studying this?

2,005

2,005 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.

2,005 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).

734 in the last 10 years · low confidence

Phrase hits: 2,005 · MeSH hits: 0

Open Europe PMC search

Who's working on it?

813

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
    Nollet F12 papers · 2026

    Amsterdam UMC location University of Amsterdam, Department of Rehabilitation Medicine; Amsterdam Movement Sciences, Rehabilitation & Development, Amsterdam, The Netherlands.

    Papers in Europe PMC
  2. 02
    Koopman FS8 papers · 2026

    University of Amsterdam, Amsterdam, The Netherlands s.koopman@amc.uva.nl.

    Papers in Europe PMC
  3. 03
    Borg K7 papers · 2024

    Division of Rehabilitation Medicine, Department of Clinical Sciences, Danderyd Hospital, Karolinska Institutet, Stockholm, Sweden.

    Papers in Europe PMC
  4. 04
    Voorn EL7 papers · 2026

    Amsterdam UMC location University of Amsterdam, Department of Rehabilitation Medicine; Amsterdam Movement Sciences, Rehabilitation & Development, Amsterdam, The Netherlands. e.l.voorn@amsterdamumc.nl.

    Papers in Europe PMC
  5. 05
    Beelen A6 papers · 2018

    Department of Rehabilitation, AMC, Meibergdreef 9, 1105AZ Amsterdam, The Netherlands. Electronic address: j.a.beelen@amc.nl.

    Papers in Europe PMC
  6. 06
    Oliveira ASB6 papers · 2024

    Neuromuscular Disorders Unit, Department of Neurology, Universidade Federal de São Paulo, São Paulo, Brazil.

    Papers in Europe PMC
  7. 07
    Brehm MA5 papers · 2026

    University of Amsterdam, Amsterdam, The Netherlands.

    Papers in Europe PMC
  8. 08
    Fontani V5 papers · 2025

    Research, Rinaldi Fontani Foundation, Florence, ITA.

    Papers in Europe PMC
  9. 09
    Oorschot S5 papers · 2026

    Amsterdam UMC location University of Amsterdam, Department of Rehabilitation Medicine; Amsterdam Movement Sciences, Rehabilitation & Development, Amsterdam, The Netherlands.

    Papers in Europe PMC
  10. 10
    Rinaldi S5 papers · 2025

    Research, Rinaldi Fontani Foundation, Florence, ITA.

    Papers in Europe PMC

Clinical research

Is a treatment being tested?

20

interventional trials for this specific condition

20 interventional trials matched this specific condition name; 2 currently recruiting in our sample.

Data as of 11 September 2026

20 interventional trials — more than 77.2% of diseases in the trials denominator have none at all (5501 of 7126; this disease is at the 94.8th percentile).

low confidence · 94.8th percentile (trials denominator)

Recruiting interventional trials

From the matched ClinicalTrials.gov set

20 interventional trials matched after quoted-phrase search and title/condition post-filter.

Observational and natural-history studies

5 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 Postpoliomyelitis syndrome — 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.

"Postpoliomyelitis syndrome" OR "Postpolio syndrome" OR "Postpoliomyelitic syndrome" OR "Post Polio Syndrome" OR "postpolio sequelae" OR "postpoliomyelitis sequelae"

Run this search on Europe PMC

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

"Postpoliomyelitis syndrome" OR "Postpolio syndrome" OR "Postpoliomyelitic syndrome" OR "Post Polio Syndrome" OR "postpolio sequelae" OR "postpoliomyelitis sequelae"

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: 20 interventional · 5 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
  • Publication count (2005) is extremely high with unknown/missing prevalence — treat as possible over-matching, not proven research intensity

Ingested 2026-07-26T21:44:56.434Z