Active — Not RecruitingNot Applicable

Natural History Study in Patients With PDE6A-, PDE6B- and RHO-linked Retinitis Pigmentosa

Germany40 participantsStarted 2023-11-17

Plain-language summary

The aim of the study is to apply a novel clinical investigation protocol in patients with Phosphodiesterase 6A (PDE6A), PDE6B and Rhodopsin (RHO)-based retinitis pigmentosa. This novel, multimodal clinical examination protocol describes and correlates structural, functional and metabolic aspects during natural disease development. Test-retest variability of new measurements as well as correlations of the structural, functional, and metabolic changes will be defined to be able to define well-suited readouts for safety and efficacy of future treatment developments before they reach the clinical phase.

Who can participate

Age range

5 Years

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion Criteria: * Age: from 5 years of age * Patient with PDE6A, PDE6B, and RHO-based retinitis pigmentosa * Patient and/or legal representatives are willing and able to give written informed consent Exclusion Criteria: * severe general disease, that would make longer examinations not possible

Questions worth asking your doctor

Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.

1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?

Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.

Questions for the trial coordinator

The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.

1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?

A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.

What they're measuring

Optical coherence tomography (OCT)

Timeframe: 3-5 years

Fundus autofluorescence imaging

Timeframe: 3-5 years

Wide-field fundus photography

Timeframe: 3-5 years

Adaptive optics imaging

Timeframe: 3-5 years

V1 morphology (MRI)

Timeframe: 3-5 years

Diffusion Tensor Imaging (DTI)

Timeframe: 3-5 years

flavoprotein fluorescence (FPF)

Timeframe: 3-5 years

Retinal oxymetry

Timeframe: 3-5 years

Trial details

NCT IDNCT06323772

SponsorUniversity Hospital Tuebingen

Sponsor typeOTHER

Study typeOBSERVATIONAL

Primary completion2027-03

View on ClinicalTrials.gov More Retinitis Pigmentosa trials

Plain-language summary

Who can participate

Age range

5 Years

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

What they're measuring

Optical coherence tomography (OCT)

Timeframe: 3-5 years

Fundus autofluorescence imaging

Timeframe: 3-5 years

Wide-field fundus photography

Timeframe: 3-5 years

Adaptive optics imaging

Timeframe: 3-5 years

V1 morphology (MRI)

Timeframe: 3-5 years

Diffusion Tensor Imaging (DTI)

Timeframe: 3-5 years

flavoprotein fluorescence (FPF)

Timeframe: 3-5 years

Retinal oxymetry

Timeframe: 3-5 years