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New registry tracks vision loss in rare eye diseases

NCT ID NCT05957276

Knowledge-focused Sponsor: Janssen Research & Development, LLC Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed This study
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Aug 28, 2026 · Updated 5 times

Summary

This study collects information from about 889 people with inherited retinal diseases (IRDs) to understand how vision changes over time. Participants have their eyesight and visual field tested regularly. The goal is to learn more about the natural course of these rare eye conditions and help doctors manage them better.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

886 people

The number who actually took part.

Started

Aug 2023

Finished

Jul 2026

Lead sponsor

A company

The lead sponsor is a pharmaceutical, biotech, or medical-device company.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Study population includes adult and pediatric participants with a documented genetic diagnosis of XLRP or ACHM and any signs or symptoms of disease.

Ages

3 years and older

Sex

Anyone

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: For Participant Selection: * Participant has any clinically documented sign(s) and/or symptom(s) consistent with an Inherited Retinal Disease (IRD), or asymptomatic with documented retinal changes detected 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 following IRDs: X-Linked Retinitis Pigmentosa (XLRP) and/or Achromatopsia (ACHM) * Participant or legally acceptable representative has provided informed consent (and participant 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 Criteria: For Participant Selection: \- Participant has received a treatment in an IRD-related interventional trial, or is being screened for an IRD-related interventional trial For Caregiver Selection: \- Caregiver has an IRD diagnosis and presents with symptoms (visual impairment)

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Conditions

The condition(s) this trial relates to.

achromatopsia inherited retinal dystrophy retinitis pigmentosa retinitis pigmentosa Y-linked

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Inherited retinal diseases

Contacts and locations

Locations

  • ASST Santi Paolo e Carlo

    Milan, 20142, Italy

  • Arcispedale S. Anna Ferrara

    Ferrara, 44124, Italy

  • Azienda Ospedaliera Univ.- Università Degli studi della Campania - Luigi Vanvitelli

    Naples, 80131, Italy

  • Azienda Ospedaliero Universitaria Careggi

    Florence, 50134, Italy

  • Bascom Palmer Eye Institute

    Miami, Florida, 33136, United States

  • Baylor College of Medicine

    Houston, Texas, 77030, United States

  • Beijing Children's Hospital, Capital Medical University

    Beijing, 100045, China

  • Beijing Tongren Hospital CMU

    Beijing, 100730, China

  • CHU Montpellier

    Montpellier, 34295, France

  • CHU Nantes

    Nantes, F44093, France

  • Centre Hospitalier National d'Ophtalmologie des Quinze-Vingts

    Paris, 75012, France

  • Centre for Eye Research Australia

    East Melbourne, 3002, Australia

  • Cleveland Clinic

    Cleveland, Ohio, 44195, United States

  • Clinica Oftalmologica Sao Lucas

    São Paulo, 01427-002, Brazil

  • Emory University

    Atlanta, Georgia, 30322, United States

  • Eye and ENT Hospital of Fudan University 1

    Shanghai, 200031, China

  • Ghent University Hospital

    Ghent, 9000, Belgium

  • Helsingin Yliopistollinen Keskussairaala

    Helsinki, 00100, Finland

  • Hopitaux universitaires de Strasbourg

    Srasbourg, 67091, France

  • Hosp Univ Fund Jimenez Diaz

    Madrid, 28040, Spain

  • Hosp. Sant Joan de Deu

    Barcelona, 08950, Spain

  • Hosp. Univ. 12 de Octubre

    Madrid, 28041, Spain

  • Hosp. Univ. Donostia

    Donostia / San Sebastian, 20014, Spain

  • Hosp. Univ. de Bellvitge

    Barcelona, 08907, Spain

  • Hosp. Virgen Macarena

    Seville, 41009, Spain

  • Hull University Teaching Hospitals NHS Trust

    Hull, HU32JZ, United Kingdom

  • Hôpital Necker-Enfants Malades

    Paris, 75015, France

  • INRET Clínica e Centro de Pesquisa

    Belo Horizonte, 30150-270, Brazil

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

    Roma, 00198, Italy

  • Instituto De Genetica Ocular

    São Paulo, 04023-061, Brazil

  • John Hopkins Hospital

    Baltimore, Maryland, 212051832, United States

  • Kepler Universitatsklinikum GmbH

    Linz, 4021, Austria

  • Kyushu University Hospital

    Fukuoka, 812-8582, Japan

  • Leeds Teaching Hospitals NHS Trust

    Leeds, LS9 7TF, United Kingdom

  • Lions Eye Institute

    Nedlands, 6009, Australia

  • Medizinische Universitaet Wien

    Vienna, A-1090, Austria

  • Mie University Hospital

    Tsu, 514 8507, Japan

  • Nagoya University Hospital

    Nagoya, 466-8560, Japan

  • National Hospital Organization Tokyo Medical Center

    Meguro-ku, 152 8902, Japan

  • Ochsner Medical Center

    New Orleans, Louisiana, 70121, United States

  • On Oftalmologia LTDA

    Pinheiros, 05406-900, Brazil

  • Oregon Health And Science University

    Portland, Oregon, 97239, United States

  • Ospedale San Raffaele

    Milan, 20132, Italy

  • Peking Union Medical College Hospital

    Beijing, 100730, China

  • Policlinico Universitario Agostino Gemelli

    Roma, 00168, Italy

  • Retina Consultants of Texas

    Bellaire, Texas, 77401, United States

  • Rigshospitalet Glostrup

    Glostrup Municipality, 2600, Denmark

  • Royal Liverpool University Hospital

    Liverpool, L7 8XP, United Kingdom

  • Samsung Medical Center

    Seoul, 06351, South Korea

  • Seoul National University Bundang Hospital

    Gyeonggi-do, 13620, South Korea

  • Severance Hospital

    Seoul, 03722, South Korea

  • Shanghai Aier Eye Hospital

    Shanghai, 200336, China

  • Shanghai General Hospital

    Shanghai, 200080, China

  • Sun YatSen University, Zhongshan Ophthalmic Center

    Guangzhou, 510060, China

  • Sunderland Eye Infirmary

    Sunderland, SR29HP, United Kingdom

  • Sunnybrook Health Sciences Center

    Toronto, Ontario, M4N 3M5, Canada

  • Sydney Children's Hospital

    Westmead, 2145, Australia

  • Tel Aviv Sourasky Medical Center

    Tel Aviv, 6423906, Israel

  • The Chaim Sheba Medical Center

    Ramat Gan, 52621, Israel

  • UCSF

    San Francisco, California, 94143, United States

  • UPMC

    Pittsburgh, Pennsylvania, 15213, United States

  • Univ of Michigan Medical Center

    Ann Arbor, Michigan, 48105, United States

  • Universitatsklinikum Bonn

    Bonn, 53127, Germany

  • Universite de Lausanne, Hopital ophtalmique Jules-Gonin

    Lausanne, 1004, Switzerland

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

    Basel, 4031, Switzerland

  • University Hospital Southampton NHS Foundation Trust

    Southampton, SO166YD, United Kingdom

  • University Hospital Wales

    Cardiff, CF244LU, United Kingdom

  • University Of Minnesota Medical Center

    Minneapolis, Minnesota, 55455, United States

  • University of Alabama Birmingham

    Birmingham, Alabama, 35294, United States

  • University of Arkansas for Medical Sciences

    Little Rock, Arkansas, 72205, United States

  • University of Iowa

    Iowa City, Iowa, 52242, United States

  • University of Rochester Medical Center

    Rochester, New York, 14642, United States

  • University of Southern California

    Los Angeles, California, 90033, United States

  • University of Texas Houston

    Houston, Texas, 77204, United States

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

    Shanghai, 200092, China

More trials for these conditions

Other studies related to the condition(s) this trial covers.