Prospective Clinical Assessment Study in Children With Achondroplasia (ACH)

NCT ID: NCT04035811

Last Updated: 2025-04-11

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

ACTIVE_NOT_RECRUITING

Total Enrollment

271 participants

Study Classification

OBSERVATIONAL

Study Start Date

2019-08-12

Study Completion Date

2026-06-30

Brief Summary

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This is a long-term, multi-center, observational study in children 2.5 to \<17 years with achondroplasia (ACH). The objective is to evaluate growth, ACH-related medical complications, assessments of health-related quality of life, body pain, functional abilities, cognitive functions, and treatments of study participants. No study medication will be administered.

Detailed Description

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Conditions

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Achondroplasia

Study Design

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Observational Model Type

CASE_ONLY

Study Time Perspective

PROSPECTIVE

Eligibility Criteria

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Inclusion Criteria

* Signed informed consent by study participant or parent(s) or legally authorized representative (LAR) and signed informed assent by the study participant (when applicable)
* Aged 2.5 to \<17 years at study entry
* Diagnosis of ACH
* Study participants and parent(s) or LAR(s) are willing and able to comply with study visits and study procedures

Exclusion Criteria

* Have hypochondroplasia or short stature condition other than ACH (e.g. trisomy 21, pseudoachondroplasia, psychosocial short stature)
* In females, having had their menarche
* Height \< -2 or \> +2 standard deviations for age and sex based on reference tables on growth in children with ACH
* Annualized height growth velocity ≤1.5 cm/year over a period ≥6 months prior to screening
* Current evidence of corneal or retinal disorder/keratopathy
* Current evidence of endocrine alterations of calcium/phosphorus homeostasis
* Have a concurrent disease or condition that in the view of the Investigator and/or Sponsor, may impact growth or where the treatment is known to impact growth.
* Significant abnormality in screening laboratory results.
* Have been treated with growth hormone, insulin-like growth factor 1 (IGF 1), or anabolic steroids in the previous 6 months or long-term treatment (\>3 months) at any time
* Have had regular long-term treatment (\>1 month) with oral corticosteroids (low-dose ongoing inhaled steroid for asthma is acceptable)
* Have had previous guided growth surgery or limb-lengthening surgery within 12 months prior to screening.
Minimum Eligible Age

30 Months

Maximum Eligible Age

17 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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QED Therapeutics, Inc., a Bridgebio company

INDUSTRY

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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QED Therapeutics, Inc. VP, Clinical Development

Role: STUDY_DIRECTOR

QED Therapeutics

Locations

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Benioff Children's Hospital Oakland

Oakland, California, United States

Site Status

Children's Hospital Colorado

Aurora, Colorado, United States

Site Status

Nemours Alfred I. Dupont Hospital for Children

Wilmington, Delaware, United States

Site Status

Johns Hopkins School of Medicine

Baltimore, Maryland, United States

Site Status

University of Missouri

Columbia, Missouri, United States

Site Status

Cincinnati Children's Hospital

Cincinnati, Ohio, United States

Site Status

Vanderbilt University Medical Center

Nashville, Tennessee, United States

Site Status

University of Wisconsin Madison - Waisman Center Bone Dysplasia Clinic

Madison, Wisconsin, United States

Site Status

Hospital de Pediatría SAMIC Prof. Dr. Juan P. Garrahan

Buenos Aires, , Argentina

Site Status

Murdoch Children's Research Institute

Parkville, , Australia

Site Status

Stollery Children's Hospital

Edmonton, Alberta, Canada

Site Status

Children's Hospital - London Health Sciences Center

London, Ontario, Canada

Site Status

University of Ottawa

Ottawa, Ontario, Canada

Site Status

University of Montreal

Montreal, Quebec, Canada

Site Status

Hopital Femme Mere Enfant

Lyon, , France

Site Status

Hopital Necker-Enfants Malades

Paris, , France

Site Status

Hopital des Enfants

Toulouse, , France

Site Status

Otto-von-Guericke-University Magdeburg Medical Fakulty

Magdeburg, , Germany

Site Status

Fondazione IRCCS Ca' Granda - Ospedale Maggiore Policlino

Milan, , Italy

Site Status

Rare Disease Unit Fondazione Policlinico A Gemelli IRCCS

Rome, , Italy

Site Status

Haukeland Universitetssjukehus

Bergen, , Norway

Site Status

Oslo Universitetssykehus

Oslo, , Norway

Site Status

KK Women's and Children's Hospital

Singapore, , Singapore

Site Status

Vithas Hospital San Jose

Barcelona, , Spain

Site Status

Hospital Universitario La Paz

Madrid, , Spain

Site Status

Hospital Universitario Virgen de la Victoria

Málaga, , Spain

Site Status

Bristol Royal Hospital for Children

Bristol, England, United Kingdom

Site Status

Birmingham Children's Hospital

Birmingham, , United Kingdom

Site Status

Queen Elizabeth University Hospital

Glasgow, , United Kingdom

Site Status

St. Thomas' Hospital

London, , United Kingdom

Site Status

Manchester University Children's Hospital

Manchester, , United Kingdom

Site Status

Sheffield Children's Hospital

Sheffield, , United Kingdom

Site Status

Countries

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United States Argentina Australia Canada France Germany Italy Norway Singapore Spain United Kingdom

References

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Savarirayan R, De Bergua JM, Arundel P, McDevitt H, Cormier-Daire V, Saraff V, Skae M, Delgado B, Leiva-Gea A, Santos-Simarro F, Salles JP, Nicolino M, Rossi M, Kannu P, Bober MB, Phillips J 3rd, Saal H, Harmatz P, Burren C, Gotway G, Cho T, Muslimova E, Weng R, Rogoff D, Hoover-Fong J, Irving M. Infigratinib in children with achondroplasia: the PROPEL and PROPEL 2 studies. Ther Adv Musculoskelet Dis. 2022 Mar 21;14:1759720X221084848. doi: 10.1177/1759720X221084848. eCollection 2022.

Reference Type DERIVED
PMID: 35342457 (View on PubMed)

Related Links

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Other Identifiers

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QBGJ398-001

Identifier Type: -

Identifier Source: org_study_id

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