Global Patient Registry of Inherited Retinal Diseases

Last updated: July 17, 2025
Sponsor: Janssen Research & Development, LLC
Overall Status: Active - Recruiting

Phase

N/A

Condition

Retina

Treatment

Standard of Care

Clinical Study ID

NCT05957276
CR109326
NOPRODRPG0002
  • Ages > 3
  • All Genders

Study Summary

The purpose of this study is to better understand the natural history of Inherited Retinal Disease (IRD) and help inform patient management.

Eligibility Criteria

Inclusion

Inclusion Criteria:

For Participant Selection:

  • Participant has any clinically documented sign(s) and/or symptom(s) consistent withan Inherited Retinal Disease (IRD), or asymptomatic with documented retinal changesdetected by imaging or electrophysiology

  • Participant has documented genetic variant(s) (known pathogenic, likely pathogenic,or variants of uncertain significance) in relevant genes for any of the followingIRDs: X-Linked Retinitis Pigmentosa (XLRP) and/or Achromatopsia (ACHM)

  • Participant or legally acceptable representative has provided informed consent (andparticipant assent, when applicable) in accordance with local requirements

  • Participant is able to have relevant visual and/or retinal assessments performed

For Caregiver Selection:

  • Caregiver has consent from the associated participant to participate in the study,or participant assent and consent from their legally acceptable representative

  • Male or female aged greater than or equal to (>=)18 years

  • Identified by an enrolled participant (or their legally acceptable representative*)as a primary caregiver

  • Caregiver has provided informed consent in accordance with local requirements

Exclusion

Exclusion Criteria:

For Participant Selection:

  • Participant has received a treatment in an IRD-related interventional trial, or isbeing screened for an IRD-related interventional trial

For Caregiver Selection:

  • Caregiver has an IRD diagnosis and presents with symptoms (visual impairment)

Study Design

Total Participants: 7000
Treatment Group(s): 1
Primary Treatment: Standard of Care
Phase:
Study Start date:
April 02, 1992
Estimated Completion Date:
May 19, 2031

Connect with a study center

  • Centre for Eye Research Australia

    East Melbourne, 3002
    Australia

    Active - Recruiting

  • Lions Eye Institute

    Nedlands, 6009
    Australia

    Active - Recruiting

  • Sydney Children's Hospital

    Westmead, 2145
    Australia

    Active - Recruiting

  • Kepler Universitatsklinikum GmbH

    Linz, 4021
    Austria

    Active - Recruiting

  • Kepler Universitätsklinikum GmbH

    Linz, 4021
    Austria

    Active - Recruiting

  • Medizinische Universitaet Wien

    Vienna, A-1090
    Austria

    Active - Recruiting

  • Medizinische Universitat Wien

    Vienna, A-1090
    Austria

    Active - Recruiting

  • Medizinische Universität Wien

    Vienna, A-1090
    Austria

    Active - Recruiting

  • Ghent University Hospital

    Gent, 9000
    Belgium

    Active - Recruiting

  • INRET Clínica e Centro de Pesquisa

    Belo Horizonte, 30150-270
    Brazil

    Active - Recruiting

  • On Oftalmologia LTDA

    Pinheiros, 05406-900
    Brazil

    Active - Recruiting

  • Clinica Oftalmologica Sao Lucas

    Sao Paulo, 01427-002
    Brazil

    Active - Recruiting

  • Instituto De Genetica Ocular

    São Paulo, 04023-061
    Brazil

    Active - Recruiting

  • Sunnybrook Health Sciences Center

    Toronto, Ontario M4N 3M5
    Canada

    Active - Recruiting

  • Beijing Children's Hospital, Capital Medical University

    Beijing, 100045
    China

    Active - Recruiting

  • Beijing Tongren Hospital CMU

    Beijing, 100730
    China

    Active - Recruiting

  • Peking Union Medical College Hospital

    Beijing, 100730
    China

    Active - Recruiting

  • Sun YatSen University, Zhongshan Ophthalmic Center

    Guangzhou, 510060
    China

    Active - Recruiting

  • Eye and ENT Hospital of Fudan University

    Shanghai, 200031
    China

    Active - Recruiting

  • Shanghai Aier Eye Hospital

    Shanghai, 200336
    China

    Active - Recruiting

  • Shanghai General Hospital

    Shanghai, 200080
    China

    Active - Recruiting

  • Xin Hua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine

    Shanghai, 200092
    China

    Active - Recruiting

  • Rigshospitalet Glostrup

    Glostrup, 2600
    Denmark

    Active - Recruiting

  • Helsingin Yliopistollinen Keskussairaala

    Helsinki, 00100
    Finland

    Active - Recruiting

  • CHU Montpellier

    Montpellier, 34295
    France

    Active - Recruiting

  • CHU Nantes

    Nantes, F44093
    France

    Active - Recruiting

  • Centre Hospitalier National d'Ophtalmologie des Quinze-Vingts

    Paris, 75012
    France

    Active - Recruiting

  • Hôpital Necker-Enfants Malades

    Paris, 75015
    France

    Active - Recruiting

  • Hopitaux universitaires de Strasbourg

    Srasbourg, 67091
    France

    Active - Recruiting

  • Universitatsklinikum Bonn

    Bonn, 53127
    Germany

    Active - Recruiting

  • The Chaim Sheba Medical Center

    Ramat Gan, 52621
    Israel

    Active - Recruiting

  • Tel Aviv Sourasky Medical Center

    Tel Aviv, 6423906
    Israel

    Active - Recruiting

  • Arcispedale S. Anna Ferrara

    Ferrara, 44124
    Italy

    Active - Recruiting

  • Azienda Ospedaliero Universitaria Careggi

    Firenze, 50134
    Italy

    Active - Recruiting

  • ASST Santi Paolo e Carlo

    Milano, 20142
    Italy

    Active - Recruiting

  • Ospedale San Raffaele

    Milano, 20132
    Italy

    Active - Recruiting

  • IRCCS Fondazione G.B. Bietti per lo Studio e la Ricerca in Oftalmologia ONLUS

    Roma, 00198
    Italy

    Active - Recruiting

  • Policlinico Universitario Agostino Gemelli

    Roma, 00168
    Italy

    Active - Recruiting

  • Kyushu University Hospital

    Fukuoka-shi, 812-8582
    Japan

    Terminated

  • National Hospital Organization Tokyo Medical Center

    Meguro-ku, 152 8902
    Japan

    Active - Recruiting

  • Nagoya University Hospital

    Nagoya-shi, 466-8560
    Japan

    Active - Recruiting

  • Mie University Hospital

    Tsu, 514 8507
    Japan

    Active - Recruiting

  • Seoul National University Bundang Hospital

    Gyeonggi-do, 13620
    Korea, Republic of

    Active - Recruiting

  • Samsung Medical Center

    Seoul, 06351
    Korea, Republic of

    Active - Recruiting

  • Severance Hospital

    Seoul, 03722
    Korea, Republic of

    Active - Recruiting

  • Hosp. Sant Joan de Deu

    Barcelona, 08950
    Spain

    Active - Recruiting

  • Hosp. Univ. de Bellvitge

    Barcelona, 08907
    Spain

    Active - Recruiting

  • Hosp. Univ. Donostia

    Donostia-San Sebastián, 20014
    Spain

    Active - Recruiting

  • Hosp Univ Fund Jimenez Diaz

    Madrid, 28040
    Spain

    Active - Recruiting

  • Hosp. Univ. 12 de Octubre

    Madrid, 28041
    Spain

    Active - Recruiting

  • Hosp. Virgen Macarena

    Sevilla, 41009
    Spain

    Active - Recruiting

  • University Hospital Basel, Eye Clinic/Institute of Molecular and Clinical

    Basel, 4031
    Switzerland

    Active - Recruiting

  • Universite de Lausanne, Hopital ophtalmique Jules-Gonin

    Lausanne, 1004
    Switzerland

    Active - Recruiting

  • University Hospital Wales

    Cardiff, CF244LU
    United Kingdom

    Active - Recruiting

  • Hull University Teaching Hospitals NHS Trust

    Hull, HU32JZ
    United Kingdom

    Active - Recruiting

  • Leeds Teaching Hospitals NHS Trust

    Leeds, LS9 7TF
    United Kingdom

    Active - Recruiting

  • Royal Liverpool University Hospital

    Liverpool, L7 8XP
    United Kingdom

    Active - Recruiting

  • University Hospital Southampton NHS Foundation Trust

    Southampton, SO166YD
    United Kingdom

    Active - Recruiting

  • Sunderland Eye Infirmary

    Sunderland, SR29HP
    United Kingdom

    Active - Recruiting

  • University of Alabama Birmingham

    Birmingham, Alabama 35294
    United States

    Active - Recruiting

  • University of Arkansas for Medical Sciences

    Little Rock, Arkansas 72205
    United States

    Active - Recruiting

  • University of Southern California

    Los Angeles, California 90033
    United States

    Active - Recruiting

  • UCSF

    San Francisco, California 94143
    United States

    Active - Recruiting

  • Bascom Palmer Eye Institute

    Miami, Florida 33136
    United States

    Active - Recruiting

  • Emory University

    Atlanta, Georgia 30322
    United States

    Active - Recruiting

  • University of Iowa

    Iowa City, Iowa 52242
    United States

    Active - Recruiting

  • Ochsner Medical Center

    New Orleans, Louisiana 70121
    United States

    Active - Recruiting

  • John Hopkins Hospital

    Baltimore, Maryland 212051832
    United States

    Active - Recruiting

  • Univ of Michigan Medical Center

    Ann Arbor, Michigan 48105
    United States

    Active - Recruiting

  • University Of Minnesota Medical Center

    Minneapolis, Minnesota 55455
    United States

    Active - Recruiting

  • University of Rochester Medical Center

    Rochester, New York 14642
    United States

    Active - Recruiting

  • Cleveland Clinic

    Cleveland, Ohio 44195
    United States

    Active - Recruiting

  • Oregon Health And Science University

    Portland, Oregon 97239
    United States

    Active - Recruiting

  • UPMC

    Pittsburgh, Pennsylvania 15213
    United States

    Active - Recruiting

  • Retina Consultants of Texas

    Bellaire, Texas 77401
    United States

    Active - Recruiting

  • Baylor College of Medicine

    Houston, Texas 77030
    United States

    Completed

  • University of Texas Houston

    Houston, Texas 77204
    United States

    Active - Recruiting

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