An observational study in RP2-associated Retinitis Pigmentosa, X-Linked Retinitis Pigmentosa (XLRP) and Retinitis Pigmentosa 2, sponsored by University of Göttingen. Recruiting at 1 site in Germany. Per ClinicalTrials.gov, last updated 2025-05-21.
Sponsored by University of Göttingen · Observational
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.
There is currently no specific patient registry for RP2-associated retinitis pigmentosa. Due to the rarity of the disease, only a few patients with this disease are seen at various care sites, making clinical care and diagnosis very challenging. In addition, there are numerous knowledge gaps regarding the course of the disease, the disease mechanisms and therapeutic approaches, which poses additional challenges for patient care. Understanding and future treatment of RP2-associated RP is crucial due to its early onset and rapid progression. There is an urgent need for targeted research to develop effective therapies.
At the Institute of Human Genetics Göttingen, we have set ourselves the goal of investigating the disease mechanisms of RP2-associated RP and contributing to the long-term development of a therapy for this rare disease.
For this purpose, we have set up a patient registry specifically for RP2-associated RP. The registry is fully online, using a secure REDCap-based database hosted at the University Medical Center Göttingen. The medical data collected will enable us to conduct studies on the natural history, mutation distribution and possible genotype-phenotype correlations of this disease. In addition, the collection of medical image data will enable evaluation for the purpose of improving diagnostic processes and supporting therapeutic studies. Last but not least, we aim to form a patient collective who can be offered participation in possible therapy studies at a later date.
We will collect retrospective data, however patient's might be recontacted at a later timepoint, which is why we have designated the time perspective as "other" in the description of the study design.
278 studies on the registry are indexed under Retinitis Pigmentosa; 72 are open to participants now.
This study's planned enrollment of 200 is above the median of 52 across 87 observational studies indexed under Retinitis Pigmentosa.
Browse Retinitis Pigmentosa studies →University of Göttingen is the lead sponsor of 37 studies on the registry; 3 are open to participants now.
Counted across the registry records on this site, refreshed daily.
Individuals affected by RP2-associated Retinitis pigmentosa worldwide.
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Informed consent
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
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.
Genotype-phenotype correlation age of onset
Influence of variant type on age of onset
Time frame: 1 year
Phenotype-genotype correlation progression
Influence of variant type on disease progression
Time frame: 20 years
Plan to share: No — IPD will be collected over a longer period of time. IPD will be shared as a supplementary information to a publication and made accessible in an open access journal. Informed consent information is freely available in the registry or via our homepage (see links).
Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.
Contact study teamGet an email when the registry record changes — status, dates, results — or when someone posts here.
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University of Göttingen