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Condition (MeSH)

Pierre Robin Syndrome

ClinicalTrials.gov lists 16 trials for Pierre Robin Syndrome or a narrower condition beneath it. Copka Sonpashan has the most among industry and government lead sponsors, with 1.

MeSH D010855 Musculoskeletal Diseases C05 C07 C16 Listed by Orphanet as a rare disease
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Not applicable Not applicable 8 Observational Observational 8 Not applicable Not applicable 8 Observational Observational 8

Trials per phase

16 of the 16 trials are tagged with Pierre Robin Syndrome itself; the rest are tagged with a narrower condition beneath it.

Get the Pierre Robin Syndrome report as a PDF

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When did Pierre Robin Syndrome trials start? (12)

Shown in this order: most recent first, 1990 onwards. 2026 is partial: trials registered with a 2026 start date so far, not a full year.

Trials over time, by phase

  • Not applicable
  • Observational

Top of scale: 2

2011: 2 trials (Observational 2) 2012: 1 trials (Not applicable 1) 2013: 1 trials (Observational 1) 2015: 1 trials (Observational 1) 2016: 2 trials (Observational 1, Not applicable 1) 2018: 1 trials (Not applicable 1) 2019: 1 trials (Observational 1) 2021: 1 trials (Not applicable 1) 2022: 2 trials (Not applicable 2) 2023: 1 trials (Observational 1) 2024: 2 trials (Not applicable 2) 2025: 1 trials (Observational 1)

Trials registered with a start date in each year, 1990 onward, stacked by phase (complete years only; the current partial year is in the table's notes). The table below lists the same counts, most recent years first.

Trials started per year
Year Trials started
2025 1
2024 2
2023 1
2022 2
2021 1
2019 1
2018 1
2016 2
2015 1
2013 1

No forecast is made for this condition: it averages 1.2 trial starts a year over the five years to September, under the 5 a year the method needs.

Recruitment duration, a model prediction: 1 trial still running at the 2026-10-09 snapshot, fewer than the 5 needed for a median. Source: ClinicalTrials.gov / AACT (CTTI), public domain.

What phase are Pierre Robin Syndrome trials in? (2)

Shown in this order: phase order.

Show the trials by phase as a table
Trials by phase
Phase Trials
Not applicable 8
Observational 8

How many Pierre Robin Syndrome trials are recruiting? (5)

Shown in this order: the order a trial moves through, from not yet recruiting to unknown.

Trials by recruitment status
Status Trials
Active, not recruiting 1
Completed 10
Terminated 2
Withdrawn 1
Unknown status 2

Status as registered on ClinicalTrials.gov. Each trial is counted once.

Which lead sponsors run the most Pierre Robin Syndrome trials? (1)

Shown in this order: most trials first. Lead sponsors the registry classes as industry, NIH, US federal, other government or network. A hospital or university the registry files as government can appear here. Sponsors it classes as academic or other are shown on the full page, because that class cannot separate an institution from a named investigator.

Lead sponsors
Sponsor Trials
Copka Sonpashan 1

Interventions as named in the registry (1)

Shown in this order: most trials first.

Interventions as named in the registry
Drug Trials
systematic therapy 2

These are the names sponsors entered on ClinicalTrials.gov that we have not matched to a single molecule. Some are drugs under a brand or code name; others are procedures, doses or arm labels.

Which publications cover Pierre Robin Syndrome? (26)

Shown in this order: major-topic papers first, then newest, then most linked to trials.

Publications
Publication Journal Year Major topic
A defect in myoblast fusion underlies Carey-Fineman-Ziter syndrome. Nature communications 2017 Yes
Identification of STAC3 variants in non-Native American families with overlapping features of Carey-Fineman-Ziter syndrome and Moebius syndrome. American journal of medical genetics. Part A 2017 Yes
Multicenter study on the effectiveness of the pre-epiglottic baton plate for airway obstruction and feeding problems in Robin sequence. Orphanet journal of rare diseases 2017 Yes
Airway management in pierre robin sequence: patterns of practice. The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association 2014 Yes
Tracheostomy versus mandibular distraction osteogenesis in infants with Robin sequence: a comparative cost analysis. The British journal of oral & maxillofacial surgery 2014 Yes

Prevalence (45)

Shown in this order: jurisdiction, then disease name. Orphanet observation for the mapped ORPHA concept; the mapping relation column says whether that concept is exactly this condition or broader or narrower.

Prevalence
Orphanet disease Type Class Geography Jurisdiction Mapping relation
Isolated Pierre Robin sequence Point prevalence 1-9 / 100 000 United Kingdom GB Exact
Isolated Pierre Robin sequence Prevalence at birth 1-9 / 100 000 United Kingdom GB Unspecified
Isolated Pierre Robin sequence Point prevalence 1-9 / 100 000 United Kingdom GB Unspecified
Isolated Pierre Robin sequence Prevalence at birth 1-9 / 100 000 United Kingdom GB Exact
Isolated Pierre Robin sequence Point prevalence 1-9 / 100 000 United Kingdom GB Exact

Rare-disease identity (2)

Shown in this order: exact, broader, narrower, other.

Rare-disease identity
Orphanet disease ORPHA code Relation Source
Isolated Pierre Robin sequence 718 Exact Orphanet Rare Disease Ontology (ORDO)
Isolated Pierre Robin sequence 718 Exact Orphadata Science knowledge files, Product 1

Not on this page

Not measured: delivery record.

Checked, with nothing recorded for this condition: serious adverse events in this condition's trials and sub-conditions in mesh.

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