Natural History of the Progression of X-Linked Retinitis Pigmentosa

NCT ID: NCT04926129

Last Updated: 2023-02-10

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

201 participants

Study Classification

OBSERVATIONAL

Study Start Date

2017-09-13

Study Completion Date

2022-12-16

Brief Summary

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The objective of the study is to gain a better understanding of disease progression over time in participants with X-linked retinitis pigmentosa (XLRP).

Detailed Description

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This study was previously posted by NightstaRx Ltd. In October, 2020, sponsorship of the trial was transferred to Biogen.

Conditions

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X-Linked Retinitis Pigmentosa

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Subgroup 1

Participant's eye with Early Treatment Diabetic Retinopathy Study (ETDRS) best-corrected visual acuity (BCVA) ≥74 letters (Equivalent to: Snellen 6/9 or 20/32; decimal 0.63; Logarithm of the minimum angle of resolution \[LogMAR\] 0.2) will be enrolled.

Other: Assessments

Intervention Type OTHER

Administered as specified in the treatment arm.

Subgroup 2

Participant's eye with ETDRS BCVA 34-73 letters, inclusive (Equivalent to: Snellen 6/12 - 6/60 or 20/40 - 20/200; decimal 0.5 - 0.1; LogMAR 0.3-1.0) will be enrolled.

Other: Assessments

Intervention Type OTHER

Administered as specified in the treatment arm.

Interventions

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Other: Assessments

Administered as specified in the treatment arm.

Intervention Type OTHER

Other Intervention Names

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BIIB112

Eligibility Criteria

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Inclusion Criteria

1. Have documentation of a pathogenic mutation in the retinitis pigmentosa GTPase regulator (RPGR) gene.
2. Are willing and able to undergo ophthalmic examinations, as required by protocol, for up to 24 months
3. Have an ETDRS BCVA in at least 1 eye of ≥34 letters (Equivalent to Snellen ≥ 6/60 or 20/200; decimal 0.1; LogMAR 1.0).
4. Mean retinal sensitivity in the eligible eye as assessed by microperimetry:

* Males with a mean retinal sensitivity of 68 loci ranging from ≥0.1 decibels (dB) and ≤20 dB.
* Females with a mean retinal sensitivity of 68 loci ranging from ≥0.1 dB and ≤25 dB.
5. If female, have symptomatic disease with impairment of visual function.

Exclusion Criteria

1. Have a history of amblyopia in the eligible eye.
2. Have any other significant ocular or non-ocular disease/disorder which, in the opinion of the investigator, may put the participant at risk because of participation in the study, may influence the results of the study, may influence the participant's ability to perform study diagnostic tests, or impact the participant's ability to participate in the study. This includes clinically significant cataracts.
3. Have participated in another research study involving an investigational medicinal product in the past 12 weeks or received a gene/cell-based therapy at any time previously (including but not limited to Intelligent Implant System implantation, ciliary neurotrophic factor therapy, nerve growth factor therapy).
Minimum Eligible Age

7 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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NightstaRx Ltd, a Biogen Company

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Medical Director

Role: STUDY_DIRECTOR

Biogen

Locations

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Research Site

Phoenix, Arizona, United States

Site Status

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Los Angeles, California, United States

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San Francisco, California, United States

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Miami, Florida, United States

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New York, New York, United States

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Portland, Oregon, United States

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Dallas, Texas, United States

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Houston, Texas, United States

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Salt Lake City, Utah, United States

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Madison, Wisconsin, United States

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Montreal, Quebec, Canada

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Vancouver, , Canada

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Helsinki, , Finland

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Montpellier, , France

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Bonn, , Germany

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Tübingen, , Germany

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Leiden, , Netherlands

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Nijmegen, , Netherlands

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Leeds, , United Kingdom

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Manchester, , United Kingdom

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Oxford, , United Kingdom

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Southampton, , United Kingdom

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Countries

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United States Canada Finland France Germany Netherlands United Kingdom

References

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von Krusenstiern L, Liu J, Liao E, Gow JA, Chen G, Ong T, Lotery AJ, Jalil A, Lam BL, MacLaren RE; XIRIUS Part 1 Study GroupXOLARIS Study Group. Changes in Retinal Sensitivity Associated With Cotoretigene Toliparvovec in X-Linked Retinitis Pigmentosa With RPGR Gene Variations. JAMA Ophthalmol. 2023 Mar 1;141(3):275-283. doi: 10.1001/jamaophthalmol.2022.6254.

Reference Type DERIVED
PMID: 36757689 (View on PubMed)

Other Identifiers

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NSR-XLRP-OS1

Identifier Type: OTHER

Identifier Source: secondary_id

274RP001

Identifier Type: -

Identifier Source: org_study_id

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