VIrtual STudy in Achondroplasia for the US (VISTA)

NCT ID: NCT06168201

Last Updated: 2025-12-18

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

RECRUITING

Total Enrollment

170 participants

Study Classification

OBSERVATIONAL

Study Start Date

2023-02-21

Study Completion Date

2028-02-29

Brief Summary

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This is an observational study of individuals with achondroplasia in the United States. The primary study population consists of pediatric individuals treated and untreated with VOXZOGO™. Study enrollment started in February 2023. The projected total duration of the study is approximately 5 years at minimum from start of study recruitment in February 2023, with the duration of individual prospective follow-up differing depending on the time of enrollment. The study duration may be extended based on decisions by the study sponsor.

Data will be collected in two formats for the primary pediatric study population:

1. Participant-mediated access to electronic health records(including medical imaging, when available) which will enable retrospective and prospective collection of secondary data reflecting real-life treatment use and clinical care. .
2. Primary data collection of Clinical Outcome Assessments (COAs) and questionnaire data.

Data will be collected in the following format for the adult cohort:

\- Participant-mediated access to electronic health records (including medical imaging, when available) which will enable retrospective and prospective collection of secondary data reflecting real-life treatment use and clinical care.

The primary study population will include approximately 150 pediatric individuals with achondroplasia regardless of their treatment status with VOXZOGO™. Individuals may change status from untreated to treated during the prospective period of the study (or vice versa) however they will only be counted once, based on their treated status at the point of enrollment.

The secondary study population will include 20 adolescent and adult participants.

Detailed Description

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Conditions

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Achondroplasia

Study Design

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Observational Model Type

COHORT

Study Time Perspective

OTHER

Study Groups

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Primary Pediatric Cohort

≤13 years old at time of enrollment. This is an observational study.

No interventions assigned to this group

Secondary Adolescent and Adult Cohort

≥14 years old at time of enrollment. This is an observational study.

No interventions assigned to this group

Eligibility Criteria

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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
Minimum Eligible Age

0 Months

Maximum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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PicnicHealth

UNKNOWN

Sponsor Role collaborator

BioMarin Pharmaceutical

INDUSTRY

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Medical Director, MD

Role: STUDY_DIRECTOR

BioMarin Pharmaceutical

Locations

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UCSF

Oakland, California, United States

Site Status RECRUITING

PicnicHealth

San Francisco, California, United States

Site Status RECRUITING

Piedmont Health

Statesville, North Carolina, United States

Site Status RECRUITING

University of Cincinnati

Cincinnati, Ohio, United States

Site Status RECRUITING

Sanford Health

Sioux Falls, South Dakota, United States

Site Status RECRUITING

Baylor College of Medicine

Houston, Texas, United States

Site Status RECRUITING

University of Wisconsin

Madison, Wisconsin, United States

Site Status RECRUITING

Countries

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United States

Central Contacts

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Trial Specialist

Role: CONTACT

Phone: 1-800-938-4587

Email: [email protected]

Facility Contacts

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Hind Al Saif

Role: primary

PicnicHealth

Role: primary

Samuel Hughes

Role: primary

Laurie Bailey

Role: primary

Isum Ward

Role: primary

Carlos Bacino

Role: primary

Janet Legare

Role: primary

Other Identifiers

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111-605

Identifier Type: -

Identifier Source: org_study_id