Active not recruitingNAINTERVENTIONAL

Prospective Natural History Study of Retinitis Pigmentosa

This study is looking at how an eye condition called Retinitis Pigmentosa (RP) develops and changes over many years. It's a natural history study, meaning researchers are observing how the condition progresses naturally, without giving any new treatments. They are particularly interested in people whose RP is caused by specific faulty genes, known as RHO, PDE6a, or PDE6b. The main goal is to understand how these genetic changes affect vision over time. This information is important because it can help doctors better understand the disease and potentially lead to new ways to help people with RP in the future. Participants will have regular eye exams and vision tests.

At a glance

Status

Active not recruiting

Phase

Sponsor

SparingVision

Enrolment target

Start

12 Feb 2020

Estimated completion

30 Jun 2026

Retinitis Pigmentosa

What is this study about?

This study is called a 'natural history' study. This means that researchers are carefully watching and recording how a particular eye condition, called Retinitis Pigmentosa (RP), changes over time on its own, without testing any new medications or treatments. Think of it like observing how a plant grows over several seasons – you're just watching what happens naturally. They are especially interested in people who have RP because of specific changes (mutations) in certain genes called RHO, PDE6a, or PDE6b. These genes are involved in how the light-sensing cells in your eyes (rods and cones) work.

The main goal of this study is to get a clearer picture of how RP progresses in people with these specific genetic changes. By regularly checking their eyesight and performing other eye tests, the researchers hope to understand how vision is affected and how the condition develops over many years. This detailed information is vital because it can help doctors and scientists understand the disease better, which is a crucial first step towards finding new ways to manage or treat RP in the future.

This study is open to both men and women, aged 18 and over, who have received a diagnosis of RP due to one of these specific genetic changes. It’s part of a bigger effort to gather more knowledge about different forms of RP.

Key takeaways

This study observes Retinitis Pigmentosa (RP) over time, not test new treatments.
It focuses on RP caused by specific gene changes (RHO, PDE6A, or PDE6B).
Participation involves regular eye exams and mobility tests.
The goal is to understand how RP progresses naturally to help future research.
You won't receive new medications.

Who may be eligible?

You might be able to join this study if you have Retinitis Pigmentosa (RP) and genetic tests have shown that your condition is caused by a change in one of the RHO, PDE6A, or PDE6B genes. You should also be able to see fairly well, with at least a reading of 20/200 in at least one eye, and have a certain range of side vision. You need to be 18 years old or older and be able to understand and speak the local language so you can follow instructions and complete tasks.

You would not be able to join this study if your RP is caused by a different gene mutation. Also, if you have any other eye problems that might affect your vision or if you are pregnant or breastfeeding, you would not be eligible to take part.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Do I have Retinitis Pigmentosa (RP)?
Has genetic testing shown my RP is caused by RHO, PDE6A, or PDE6B genes?
Is my vision at least 20/200 in one eye and do I have adequate side vision?
Am I 18 years old or older?
Am I pregnant or breastfeeding? (If yes, you would not be eligible.)

Answer every question to see your result.

What does participation involve?

If you decide to take part in this study, you won't be given any new medications or treatments. Instead, the researchers will regularly check your eyes and vision over time. This will involve standard eye examinations, similar to what you might have at a regular eye doctor's visit, and tests to see how well you can move around or navigate. These appointments will help the researchers understand how your Retinitis Pigmentosa progresses naturally. The total duration of your participation in the study will be determined by the researchers, but the primary focus is on long-term observation to track changes over many years.

Potential risks and benefits

Taking part in this study does not involve receiving any new treatments, so there are no risks associated with new medications. The assessments, like eye exams and mobility tests, are generally safe procedures. A potential benefit is that your participation will help doctors and researchers learn more about Retinitis Pigmentosa, which could eventually lead to better care or treatments for people with the condition in the future. You are always free to withdraw from the study at any time, for any reason, without it affecting your medical care.

Locations (2)

UPMC Eye Center
Verified postcode
Pittsburgh, United States
CHNO XV-XX Paris - CIC 1423
Verified postcode
Paris, France

Common questions

What is Retinitis Pigmentosa (RP)?

RP is an eye condition that gradually causes vision loss, especially in low light and side vision, and can eventually affect central vision.

What does 'natural history study' mean?

It means researchers are observing how your condition progresses naturally over time, without giving any new treatments or medications.

Will I receive any new treatment in this study?

No, this study does not involve giving new treatments. It's purely observational to understand the disease better.

What kind of tests will I have?

You will have regular eye examinations and tests to check your vision and how you move around, similar to routine eye doctor visits.

Can I leave the study at any time?

Yes, you are free to withdraw from the study at any point, and your decision will not affect your medical care.