Actively Recruiting
InsightRP2: a Global Patient Registry for RP2-associated Retinitis Pigmentosa
Led by University of Göttingen · Updated on 2025-05-21
200
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
AI-Summary
What this Trial Is About
Researchers are studying RP2-associated retinitis pigmentosa (RP), a rare inherited eye disease, through a secure online patient registry called InsightRP2. This registry aims to improve scientific understanding of the disease's progression, genetic variations, and to support future gene therapy research. The study focuses on filling knowledge gaps due to the rarity and complexity of RP2-associated RP and its early onset and rapid progression. Participants with a confirmed molecular genetic diagnosis involving a variant in the RP2 gene can join the registry, which is fully online and uses a secure database. The registry collects medical, genetic, and imaging data from individuals of all ages affected by RP2-associated RP. Retrospective data will be gathered, and participants might be recontacted for future studies or therapy trials. During the study, participants contribute their medical history and diagnostic information through an online questionnaire available in English and German. Researchers will analyze genotype-phenotype correlations regarding the age of onset and disease progression over time. The registry helps improve diagnostic processes and supports potential therapeutic studies, with participation lasting as long as the registry remains active and patients remain engaged.
CONDITIONS
Brief Title
InsightRP2 Registry
Who Can Participate
Eligibility Criteria
You may qualify if you...
- A molecular genetic diagnosis involving a heterozygous or hemizygous variant in RP2
- Written informed consent to participate is required
- Patients of all ages are allowed to participate
- Ability to navigate registry documentation in English or German
You will not qualify if you...
- Patients with evidence of non-RP2 molecular genetic diagnoses
- No consent from the patient or legal guardian to collect and analyze data
- Inability to navigate registry documentation in English or German
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person or online)
Duration - Up to 20 years
Participants with RP2-associated retinitis pigmentosa are observed to collect medical data and images to understand disease progression and support future therapy studies.
Periodic visits as scheduled by the registry
Trial Site Locations
Total: 1 location
1
University Medicine Göttingen
Göttingen, Lower Saxony, Germany, 37073
Actively Recruiting
Research Team
N
Nina Bögershausen, MD
B
Bernd Wollnik, MD, Prof.
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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