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Prospective Clinical Assessment Study in Children With Achondroplasia (ACH)

Active, not recruiting
Conditions
Achondroplasia
Registration Number
NCT04035811
Lead Sponsor
QED Therapeutics, Inc.
Brief Summary

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

Not available

Recruitment & Eligibility

Status
ACTIVE_NOT_RECRUITING
Sex
All
Target Recruitment
271
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

Key

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.

Study & Design

Study Type
OBSERVATIONAL
Study Design
Not specified
Primary Outcome Measures
NameTimeMethod
Annualized height velocity (cm/year)Up to 2 years
Secondary Outcome Measures
NameTimeMethod

Trial Locations

Locations (32)

Benioff Children's Hospital Oakland

🇺🇸

Oakland, California, United States

Children's Hospital Colorado

🇺🇸

Aurora, Colorado, United States

Nemours Alfred I. Dupont Hospital for Children

🇺🇸

Wilmington, Delaware, United States

Johns Hopkins School of Medicine

🇺🇸

Baltimore, Maryland, United States

University of Missouri

🇺🇸

Columbia, Missouri, United States

Cincinnati Children's Hospital

🇺🇸

Cincinnati, Ohio, United States

Vanderbilt University Medical Center

🇺🇸

Nashville, Tennessee, United States

University of Wisconsin Madison - Waisman Center Bone Dysplasia Clinic

🇺🇸

Madison, Wisconsin, United States

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

🇦🇷

Buenos Aires, Argentina

Murdoch Children's Research Institute

🇦🇺

Parkville, Australia

Scroll for more (22 remaining)
Benioff Children's Hospital Oakland
🇺🇸Oakland, California, United States

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