Natural History of Patients With Inherited Retinal Diseases Due to Mutations in RPE65 Gene

NCT ID: NCT04525261

Last Updated: 2023-11-29

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

60 participants

Study Classification

OBSERVATIONAL

Study Start Date

2020-05-01

Study Completion Date

2020-07-31

Brief Summary

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Rationale:

In preparation for treatment with gene therapy, this study is being conducted in order to investigate the natural history of Inherited Retinal Dystrophies (IRDs) due to mutations in RPE65 gene. Such a study will help identify suitable patients for therapeutic intervention.

Methodology:

This is a multicenter retrospective, descriptive chart review study designed to assess retinal structure and function in subjects with IRDs due to mutation in RPE65 gene by visual acuity, visual field measurements, Optical Coherence Tomography (OCT), and a number of other vision-related assessments.

Detailed Description

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Conditions

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Leber Congenital Amaurosis 2 Retinitis Pigmentosa 20

Study Design

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Observational Model Type

CASE_ONLY

Study Time Perspective

RETROSPECTIVE

Eligibility Criteria

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Inclusion Criteria

* Must be willing to adhere to protocol as evidenced by written informed consent or parental permission and subject assent.
* Subjects diagnosed with Retinitis Pigmentosa or Leber Congenital Amaurosis.
* Molecular diagnosis showing mutations (homozygotes or compound heterozygotes) in RPE65 gene.
* Age three years old or older.
* Minimum of two office / clinic visits encounters with ophthalmic assessment that span a follow-up period of at least 1 year with the last visit occurring within the last six months (before signature of informed consent and of study start).

Exclusion Criteria

* Unable or unwilling to meet requirements of the study.
* Participation in a clinical study with an investigational drug during the retrospective study time period (i.e., from 01/01/1990 to study start date).
Minimum Eligible Age

3 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Retina Italia Onlus

UNKNOWN

Sponsor Role collaborator

University of Campania Luigi Vanvitelli

OTHER

Sponsor Role lead

Responsible Party

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Francesca Simonelli

Prof

Responsibility Role PRINCIPAL_INVESTIGATOR

Locations

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Ospedale di Camposampiero, ULSS6 Euganea, Camposampiero

Camposampiero, , Italy

Site Status

UOC Oculistica - AOU Careggi

Florence, , Italy

Site Status

UOC Oculistica - Ospedale Sacco

Milan, , Italy

Site Status

UOC Oculistica - Ospedale San Paolo

Milan, , Italy

Site Status

UOC Oculistica - AOU Università degli Studi della Campania Luigi Vanvitelli

Naples, , Italy

Site Status

Centro di Neuroftalmologia dell'età evolutiva - IRCCS Fondazione Istituto Neurologico Nazionale C. Mondino

Pavia, , Italy

Site Status

UOC Oculistica - Fondazione IRCCS Policlinico San Matteo

Pavia, , Italy

Site Status

UOC Oculistica - Ospedale Bambin Gesù di Roma

Rome, , Italy

Site Status

UOC Oculistica - Policlinico Gemelli di Roma

Rome, , Italy

Site Status

Countries

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Italy

Other Identifiers

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RPE65-NHS

Identifier Type: -

Identifier Source: org_study_id