InsightRP2 Registry
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-as
| Condition(s) | RP2-associated Retinitis Pigmentosa, X-Linked Retinitis Pigmentosa (XLRP), Retinitis Pigmentosa 2 |
|---|---|
| Status | Recruiting |
| Study type | Observational |
| 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. |
| Who can participate | 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. |
| Sex | All |
| Lead sponsor | University of Göttingen |
| Locations | Göttingen, Lower Saxony, Germany |
| Start date | 2025-05-01 |
| NCT ID | NCT06982417 |
| Official listing | https://clinicaltrials.gov/study/NCT06982417 |