InsightRP2 Registry

Launched by UNIVERSITY OF GÖTTINGEN · May 13, 2025

Keywords

ClinConnect Summary

The InsightRP2 Registry is a research project aimed at better understanding a rare eye condition called RP2-associated retinitis pigmentosa (RP). This condition affects vision and can lead to serious sight loss. The registry is collecting important medical information, genetic details, and images from individuals diagnosed with this specific type of retinitis pigmentosa. By gathering this data, the researchers hope to support the development of a gene therapy that could help treat the condition in the future.

To join the study, participants need to have a confirmed genetic diagnosis that shows they have a variant in the RP2 gene, and they must be able to give consent to participate. People of all ages can take part, as long as they can understand the materials provided in English or German. It's important to note that individuals with different genetic diagnoses will not be eligible for this study. If you choose to participate, you can expect to fill out a questionnaire and possibly take part in studies that analyze images of your eyes. Your contribution can help advance research and potentially lead to new treatment options for others with this condition.

Gender

ALL

Eligibility criteria

• 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.