A Patient Registry Study for Patients Treated With Voretigene Neparvovec in US

NCT ID: NCT03597399

Last Updated: 2025-09-22

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

COMPLETED

Total Enrollment

87 participants

Study Classification

OBSERVATIONAL

Study Start Date

2019-01-10

Study Completion Date

2025-06-30

Brief Summary

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The objective of this study is to collect long-term safety information (i.e., for 5 years after treatment) associated with voretigene neparvovec-rzyl (vector and/or transgene), its subretinal injection procedure, the concomitant use of corticosteroids, or a combination of these procedures and products.

The enrollment period will last for two years from the first treatment following product approval (through 31March2020) and include a minimum of 40 patients.

Detailed Description

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Voretigene neparvovec-rzyl is a gene therapy intended for use in individuals with confirmed biallelic RPE65 mutation-associated retinal dystrophy and viable retinal cells. Mutations in the RPE65 gene are associated with several clinical manifestations including nyctalopia, decreased visual field and decreased visual acuity. Voretigene neparvovec-rzyl uses a non-pathogenic recombinant adeno-associated virus vector serotype 2 (AAV2) to deliver cDNA encoding RPE65 protein to target cells in the retina. Voretigene neparvovec-rzyl is administered to each eye via subretinal injection. The administration of voretigene neparvovec-rzyl is recommended to be performed to each eye on separate days within a close interval. Prescribing information recommends an immunomodulatory regimen concomitant with administration, with the actual regimen dependent upon the dosing center.

This post authorization safety study will focus on further characterizing the long-term safety profile of voretigene neparvovec-rzyl in patients with RPE65 mutation-associated retinal dystrophy using an observational, longitudinal design.

Conditions

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Confirmed Biallelic RPE65 Mutation-associated Retinal Dystrophy

Study Design

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Observational Model Type

COHORT

Study Time Perspective

OTHER

Interventions

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AAV2-hRPE65v2,voretigene neparvovec-rzyl

Subretinal administration of gene therapy vector AAV2-hRPE65v2 (voretigene neparvovec-rzyl) to both eyes via surgical procedures on separate days.

Intervention Type BIOLOGICAL

Other Intervention Names

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AAV2-hRPE65v2 voretigene neparvovec gene therapy vector

Eligibility Criteria

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Inclusion Criteria

1. Received voretigene neparvovec-rzyl in at least one eye.
2. Signed informed consent/assent (when applicable). These are obtained as required under institutional policies and applicable laws and regulations unless a consent waiver is obtained from the Institutional Review Board (IRB)/Independent Ethics Committee (IEC).

Exclusion Criteria

1\. Previously participated in, or are currently participating in, a Spark Therapeutics clinical trial and received voretigene neparvovec-rzyl in both eyes.
Minimum Eligible Age

12 Months

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Spark Therapeutics, Inc.

INDUSTRY

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Clinical Ophthalmic Lead

Role: STUDY_DIRECTOR

Spark Therapeutics, Inc.

Locations

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Children's Hospital of Los Angeles

Los Angeles, California, United States

Site Status

Bascom Palmer Eye Institute

Miami, Florida, United States

Site Status

University of Iowa Hospitals & Clinics

Iowa City, Iowa, United States

Site Status

Massachusetts Eye and Ear Institute

Boston, Massachusetts, United States

Site Status

Kellogg Eye Center

Ann Arbor, Michigan, United States

Site Status

Cincinnati Eye Institute

Cincinnati, Ohio, United States

Site Status

Casey Eye Institute

Portland, Oregon, United States

Site Status

Children's Hospital of Philadelphia (CHOP)

Philadelphia, Pennsylvania, United States

Site Status

Scheie Eye Institute

Philadelphia, Pennsylvania, United States

Site Status

Cullen Eye Institute

Houston, Texas, United States

Site Status

Countries

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United States

Other Identifiers

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SPKRPE-PASS

Identifier Type: -

Identifier Source: org_study_id

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