Registry collecting data from people with RP2-associated retinitis pigmentosa
Collects medical, genetic and imaging data from people with RP2-related retinitis pigmentosa, an eye disease.
Plain-language title generated from the registry record
Registry title: InsightRP2 Registry
Key facts
- Where
- Göttingen, GermanySee the site
Where in Germany
- University Medicine GottingenGöttingen, GermanyTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- University of Göttingen
- Trial code
- NCT06982417
- Record updated
- 21 May 2025
- Original description
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.Read full original descriptionShow less
InsightRP2: a Global Patient Registry for RP2-associated Retinitis Pigmentosa
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.
Inclusion: 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: 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.