ORPHA:99857
Secondary syringomyelia
Publications
106
57.1th percentile
Trials
0
Interventional, condition-specific
Researchers
470
Distinct authors in sample
Gene link
—
Readiness
2/6
Stages with a signal
Clinical definition (Orphanet)
Secondary syringomyelia is a rare medullar disease defined as a development of a fluid-filled cavity or syrinx within the spinal cord due to blockage of CSF circulation (e.g., due to basal archnoiditis, meningeal carcinomatosis, various mass lesions), spinal cord injury (e.g., due to trauma, radiation necrosis, hemorrhage, spinal abscess), spinal dysraphism or intramedullary tumours. It presents with neuropathic pain, numbness, muscular weakness, changes in tone or spasticity or autonomic changes (hyperhidrosis, heart rate or blood pressure instability). Selective loss of pain and temperature with relative preservation of dorsal column function (touch and pressure) are classic findings.
Cross-references
Joined from Mondo / Orphanet. MeSH labels may enter searches; UMLS / OMIM / NCIT are stored for reference.
- MONDO:0020509
- UMLS:C4749399
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.”
2/6 stages with a signal
No specific-condition interventional trial, but broader-category trials exist — discuss eligibility with a clinician.
- Gene identifiedNot found
No GenCC disease–gene assertion in this build
- LiteraturePresent
106 matched papers (60 in last 10 years) Source
- Phenotype characterisedNot checked
Not yet enriched from Monarch / HPO
- Animal modelNot checked
Not yet enriched from Monarch / Alliance
- Orphan designationNot checked
FDA/EMA orphan-drug designation not enriched yet
- Interventional trialPartial
None under the specific name; 10 for broader category syringomyelia
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)
Not enriched in this build — Monarch phenotype joins were not run for this record.
Animal models (Monarch / Alliance)
Not enriched in this build.
Literature
Is anyone studying this?
106
106 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=5449) is 41.
106 papers since the earliest indexed year in this search — median last-10-year count for a rare disease in this dataset is 41 (publications denominator n=5449).
60 in the last 10 years · high confidence · 57.1th percentile (publications denominator)
Phrase hits: 106 · MeSH hits: 0
Who's working on it?
470
Distinct author names in 106 sampled papers — named people below.
Who's working on it?
No interventional trial matched this name; these authors publish on it in the sampled literature — a practical starting point for contact.
- 01Knowler SP8 papers · 2020
Fitzpatrick Referrals, Goldaming, Surrey, United Kingdom.
Papers in Europe PMC - 02Rusbridge C7 papers · 2020
Fitzpatrick Referrals, Goldaming, Surrey, United Kingdom; School of Veterinary Medicine, Faculty of Health & Medical Sciences, University of Surrey, Guildford, Surrey, United Kingdom.
Papers in Europe PMC - 03Wang Y4 papers · 2026
Department of Neurology, Yantai Shan Hospital, Yantai 264000, Shandong Province, China.
Papers in Europe PMC - 04Ali A2 papers · 2014
Department of Pediatric Surgery, All India Institute of Medical Sciences, New Delhi, India.
Papers in Europe PMC - 05Bajpai M2 papers · 2014
Department of Pediatric Surgery, All India Institute of Medical Sciences, New Delhi, India.
Papers in Europe PMC - 06Deepak S2 papers · 2022
Department of Neurosurgery, Hull University Teaching Hospitals, Hull, United Kingdom.
Papers in Europe PMC - 07Gayan S2 papers · 2014
Department of Pediatric Surgery, All India Institute of Medical Sciences, New Delhi, India.
Papers in Europe PMC - 08Hu Y2 papers · 2025
Department of Neurosurgery, The First Affiliated Hospital of Zhengzhou University, Zhengzhou, Henan, China.
Papers in Europe PMC - 09Inoue T2 papers · 2023
Department of Neurosurgery, Saitama Red Cross Hospital, Saitama, Japan.
Papers in Europe PMC - 10Itoyama Y2 papers · 2000Papers in Europe PMC
Clinical research
Is a treatment being tested?
0
interventional trials for this specific condition
No interventional trial testing a treatment matched this specific condition name on ClinicalTrials.gov (observational studies and pan-disease registries are listed separately when present). 10 trials are registered for syringomyelia, the broader category — shown separately because they may or may not enrol this specific subtype.
Data as of 27 July 2026
No matched interventional trials. This is true for 73% of diseases in the trials denominator (5114 of 7003). Here are the researchers publishing on it.
high confidence · 36.5th percentile (trials denominator)
Recruiting interventional trials
From the matched ClinicalTrials.gov set
No interventional trial testing a treatment was found for this specific condition name on ClinicalTrials.gov.
10 interventional trials matched syringomyelia, the broader category — listed below. Those studies are not counted in the condition-specific total.
Broader category: syringomyelia
10
Interventional trials for the parent category, exclusive of NCT IDs already counted above. Eligibility for this subtype is not guaranteed.
Worth raising with a clinician. How we count trials.
Recruiting under the broader category
- NCT06268093·RECRUITING·The Therapeutic Effect of Thalidomide in Syringomyelia
Conditions: Syringomyelia · Thalidomide·Matched via name phrase
- NCT06308367·RECRUITING·The Therapeutic Effect of Betaine in Syringomyelia
Conditions: Syringomyelia·Matched via name phrase
- NCT07720206·NOT YET RECRUITING·Abnormality of the Central Canal of the Spinal Cord in Syringomyelia in a Patient With a Basal Skull Malformation
Conditions: Chiari Malformation Type I · Syringomyelia·Matched via name phrase
- NCT06375759·RECRUITING·Subarachnoid-Subarachnoid (S-S) Bypass Versus Adhesion Lysis in Spinal Arachnoiditis and Syringomyelia
Conditions: Syringomyelia·Matched via name phrase
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 on the overview but are not added to the query string.
"Secondary syringomyelia"
ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):
"Secondary syringomyelia"
Study-type breakdown: 0 interventional · 0 observational · 0 expanded access. Only interventional studies enter the trial headline.
Parent-category trials query:
"syringomyelia"
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 2026-07-27T06:23:59.670Z