Global Patient Registry of Inherited Retinal Diseases
Purpose
The purpose of this study is to better understand the natural history of Inherited Retinal Disease (IRD) and help inform patient management.
Condition
- Inherited Retinal Diseases
Eligibility
- Eligible Ages
- Over 3 Years
- Eligible Genders
- All
- Accepts Healthy Volunteers
- No
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)
Study Design
- Phase
- Study Type
- Observational
- Observational Model
- Cohort
- Time Perspective
- Prospective
Arm Groups
Arm | Description | Assigned Intervention |
---|---|---|
Participants With Inherited Retinal Diseases (IRDs) | Adult and pediatric (greater than or equal to [>=] 3 years) participants with a documented genetic diagnosis of X-linked retinitis pigmentosa (XLRP) or Achromatopsia (ACHM) and any signs or symptoms of IRD or documented retinal changes detected by imaging or electrophysiology. |
|
Recruiting Locations
Birmingham, Alabama 35294
Little Rock, Arkansas 72205
Los Angeles, California 90033
Iowa City, Iowa 52242
New Orleans, Louisiana 70121
Baltimore, Maryland 212051832
Ann Arbor, Michigan 48105
Minneapolis, Minnesota 55455
Rochester, New York 14642
Cleveland, Ohio 44195
Pittsburgh, Pennsylvania 15213
Bellaire, Texas 77401
Houston, Texas 77030
Houston, Texas 77204
More Details
- NCT ID
- NCT05957276
- Status
- Recruiting
- Sponsor
- Janssen Research & Development, LLC