Online registry for RP2-associated retinitis pigmentosa

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

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.

Why it matters

Who can join: the full rules

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 it's running

• 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

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.