Online registry for RP2-associated retinitis pigmentosa
InsightRP2: a Global Patient Registry for RP2-associated Retinitis Pigmentosa
This study is setting up an online registry to collect information from people with RP2-associated retinitis pigmentosa to help researchers learn more about the disease and develop new treatments.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 200 (estimated) |
| Sex | All |
| Sponsor | University of Göttingen Academic / other |
| Locations | 1 site (Göttingen, Lower Saxony) |
| Trial ID | NCT06982417 on ClinicalTrials.gov |
What this trial studies
The InsightRP2 Registry is an online platform designed to collect medical, genetic, and imaging data from individuals affected by RP2-associated retinitis pigmentosa. This observational registry aims to enhance the scientific understanding of this rare disease and support research efforts towards developing gene therapies. By gathering comprehensive data, the registry will facilitate natural history studies and image analysis, addressing significant knowledge gaps in disease mechanisms and therapeutic approaches. The initiative is crucial for improving clinical care and diagnosis for patients with this rapidly progressing condition.
Who should consider this trial
Good fit: Ideal candidates for this registry are individuals of all ages with a confirmed molecular genetic diagnosis of RP2-associated retinitis pigmentosa.
Not a fit: Patients with non-RP2 molecular genetic diagnoses or those unable to navigate the registry documentation in English or German may not benefit from this registry.
Why it matters
Potential benefit: If successful, this registry could lead to improved understanding and potential therapies for patients with RP2-associated retinitis pigmentosa.
How similar studies have performed: While this specific registry approach is novel for RP2-associated retinitis pigmentosa, similar patient registries have shown success in advancing research for other rare diseases.
Eligibility criteria
Show full inclusion / exclusion 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.
Where this trial is running
Göttingen, Lower Saxony
- University Medicine Göttingen — Göttingen, Lower Saxony, Germany (Recruiting)
Study contacts
- Study coordinator: Nina Bögershausen, MD
- Email: insight.rp2@med.uni-goettingen.de
- Phone: +49 (0)551 / 39-69016
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.