Ireland
--:--IST
Recruiting Observational

InsightRP2 Registry

NCT06982417 · tracked via the Priya Life Science Germany tracker
Phase
Observational
Started
2025-05-01
Last updated
2025-05-21

Condition(s) studied

RP2-associated Retinitis PigmentosaX-Linked Retinitis Pigmentosa (XLRP)Retinitis Pigmentosa 2

Study summary

InsightRP2 is a secure online patient registry specific to RP2-associated retinitis pigmentosa (RP). It is our goal to further the scientific understanding of this rare disease and to support research in to a gene therapy for RP2-associated RP.

We collect medical, genetic and imaging data from people affected by RP2-associated RP and will coduct a natural history study as well as image analysis studies.

Eligibility

Sex
ALL
Min age
—
Max age
—
Healthy volunteers
No
Inclusion Criteria: * A molecular genetic diagnosis involving a heterozygous or hemizygous variant in RP2 and a written informed consent to participate are required for access to the registry questionnaire. Patients of all ages meeting the above criteria will be allowed to participate. As documentation will be in English and German, those who can navigate these pages will be included. Exclusion Criteria: * Patients with evidence of non-RP2 molecular genetic diagnoses will be excluded. Collection of data and further analysis will not be possible without the consent of the patient or legal guardian. Patients who cannot navigate registry documentation in English or German will be excluded.

Primary outcome measure(s)

  • Genotype-phenotype correlation age of onset — 1 year
    Influence of variant type on age of onset
  • Phenotype-genotype correlation progression — 20 years
    Influence of variant type on disease progression

Trial sites (1)

FacilityCityRegionStatus
University Medicine Göttingen Göttingen Lower Saxony Recruiting

More University of Göttingen trials in Germany

Official registry record

This page summarises publicly available registry data for informational purposes — not medical advice. Eligibility is determined by each study team; patients should discuss participation with their clinician.

View NCT06982417 on ClinicalTrials.gov ↗ ← All trials in Germany