New study uses virtual tools to track achondroplasia over time
NCT ID NCT06168201
First seen Jun 27, 2026 · Last updated Jul 01, 2026 · Updated 2 times
Summary
This study observes about 170 children and adults with achondroplasia in the United States over roughly 5 years. Researchers will collect health records and questionnaires to track growth, medical issues, surgeries, and quality of life. The goal is to better understand the condition and how treatments like VOXZOGO™ are used in real life.
This is an AI summary of the original study and may miss details. Read our disclaimer.
Study facts
What this study's own registry entry says, in plain language.
- Participants
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About 170 people
The number the study aims to enrol. It can still change while the study runs.
- Started
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Feb 2023
- Expected to finish
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Feb 2028
An estimate. End dates often move.
- Lead sponsor
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A company
The lead sponsor is a pharmaceutical, biotech, or medical-device company.
Who can take part
This study's own entry requirements. Only the study team can say for certain whether you qualify.
Who is studied
The primary study population will include individuals with achondroplasia regardless of their treatment status with VOXZOGO™. Whilst individuals may change status from untreated to treated during the prospective period of the study (or vice versa), for the purposes of recruitment targets they will only be counted once, based on their treated status at the point of enrollment
- Ages
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0 months to 18 years
- Sex
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Anyone
- Healthy volunteers
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Not accepted
This study is not open to healthy volunteers. The entry requirements below say who it is open to.
Show the full entry requirements Hide the full entry requirements
Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.
Inclusion Criteria: * Physician diagnosis of achondroplasia * Age at time of enrollment: Primary Pediatric Cohort: ≤13 years old Secondary Adolescent and Adult Cohort: ≥14 years old * Receiving medical care in the United States * Complete PicnicHealth's onboarding process, including signing informed consent and authorization for medical record retrieval Exclusion Criteria: * Lack of any medical records
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Get notified about this study
Sign up to get updates when this study changes or when new studies for Achondroplasia are added.
Genom att skicka in godkänner du våra Användarvillkor
Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
How to take part
Only the study team decides who joins. These are the ways to reach them.
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The study's own enquiry address
This study publishes an address for enquiries. See it below .
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The places running it
8 sites. The list below names each one and where it is.
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The official record
ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.
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A doctor treating you
A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.
Contacts and locations
Show contact details
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Genom att skicka in godkänner du våra Användarvillkor
Study contacts
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Contact
Email: •••••@•••••
Locations
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Baylor College of Medicine
RECRUITINGHouston, Texas, 77030-2316, United States
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Johns Hopkins University (JHU)
RECRUITINGBaltimore, Maryland, 21205, United States
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PicnicHealth
RECRUITINGSan Francisco, California, 94107, United States
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Piedmont Health
RECRUITINGStatesville, North Carolina, 28625, United States
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Sanford Health
RECRUITINGSioux Falls, South Dakota, 57115, United States
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UCSF
RECRUITINGOakland, California, 94609, United States
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University of Cincinnati
RECRUITINGCincinnati, Ohio, 45229, United States
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University of Wisconsin
RECRUITINGMadison, Wisconsin, 53726, United States
More trials for these conditions
Other studies related to the condition(s) this trial covers.
- Can a weekly shot help children with achondroplasia grow taller?
- Can growth hormone boost height in children with dwarfism?
- Weekly shot may boost growth in kids with dwarfism
- Experimental achondroplasia drug trial halted early
- No treatment, just tracking: PROPEL study watches how kids with achondroplasia grow
- New drug aims to boost height in kids with dwarfism