InsightRP2 Registry
InsightRP2: a Global Patient Registry for RP2-associated Retinitis Pigmentosa
InsightRP2: a Global Patient Registry for RP2-associated Retinitis Pigmentosa
Sponsor study identifier
observational
200
1 country
1
Study Start
May 1, 2025
Actual (reported)Primary Completion
May 1, 2045
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Study Completion
May 1, 2045
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
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.
Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.
May 1, 2045
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
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Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.
May 1, 2025
Actual (reported)May 13, 2025
Actual (reported)May 21, 2025
Actual (reported)May 1, 2045
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
May 1, 2045
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Genotype-phenotype correlation age of onset
Influence of variant type on age of onset
1 year
Phenotype-genotype correlation progression
Influence of variant type on disease progression
20 years
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.
Individuals affected by RP2-associated Retinitis pigmentosa worldwide.
University Medicine Göttingen
Göttingen, Lower Saxony, 37073, Germany
Bogershausen N, Doring P, Gerhardt M, Fedorenko A, Strohmeyer C, Bayati R, Li Y, Yigit G, Kaygusuz E, Gutierrez-Gutierrez O, Gaubert M, Javanmardi B, Boss K, Kowallick A, Krawitz P, Michalakis S, Ueffing M, Zimmermann WH, Hoerauf H, Buning H, Feltgen N, Cyganek L, Wollnik B. Insights Into RP2-Associated Retinopathy: From Molecular Basis to Clinical Translation. Hum Mutat. 2026 Oct 17;2026:1839164. doi: 10.1155/humu/1839164. eCollection 2026.
First Submitted
May 13, 2025
First Posted
May 21, 2025
Study Start
May 1, 2025
Actual (reported)Primary Completion
May 1, 2045
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Contact the study team to confirm eligibility.
Study Completion
May 1, 2045
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Last Updated
May 21, 2025
Record last verified: 2025-05
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).
Download the complete ClinicalTrials.gov record imported by Syfrah, including fields not shown in this page. The registry may contain a newer revision.
Source: ClinicalTrials.gov.
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