For Healthcare Professionals

Global Patient Registry of Inherited Retinal Diseases

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About the study

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

You may be eligible to participate in the study if you meet the following criteria:

INCLUSION CRITERIA

Inclusion Criteria:

For Participant Selection:

  1. 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
  2. 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)
  3. Participant or legally acceptable representative has provided informed consent (and participant assent, when applicable) in accordance with local requirements
  4. Participant is able to have relevant visual and/or retinal assessments performed

For Caregiver Selection:

  1. Caregiver has consent from the associated participant to participate in the study, or participant assent and consent from their legally acceptable representative
  2. Male or female aged greater than or equal to (>=)18 years
  3. Identified by an enrolled participant (or their legally acceptable representative*) as a primary caregiver
  4. Caregiver has provided informed consent in accordance with local requirements

EXCLUSION CRITERIA

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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Study Locations

Enter your ZIP code/Postal code/PIN code to locate study sites near you:

How to Apply


Contact the study center to learn if this study is a good match for you.
Phone iconCall 844-434-4210Email iconEmail Study Center

Study Details


Contition

Inherited Retinal Diseases

Age

3+

Participants Needed

7000

Est. Completion Date

May 19, 2031

Treatment Type

OBSERVATIONAL


Sponsor

Janssen Research & Development, LLC

ClinicalTrials.gov NCT Identifier

NCT05957276

Study Number

NOPRODRPG0002

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