RecruitingOBSERVATIONAL

InsightRP2 Registry

The InsightRP2 Registry is a secure online project designed for people living with a rare eye condition called RP2-associated Retinitis Pigmentosa (RP). This condition, often affecting vision early in life and getting worse quickly, currently has no specific cure. The main goal of this registry is to collect important medical information, genetic details, and eye scan data from patients. By doing this, researchers hope to gain a much clearer understanding of how the disease develops over time. This vital information will help speed up the discovery and development of new treatments, particularly gene therapies, which could eventually help preserve eyesight for those affected by RP2-associated RP.

At a glance

Status

Recruiting

Sponsor

University of Göttingen

Enrolment target

200

Start

01 May 2025

Estimated completion

01 May 2045

RP2-associated Retinitis Pigmentosa X-Linked Retinitis Pigmentosa (XLRP)Retinitis Pigmentosa 2

What is this study about?

The InsightRP2 Registry is an important project that aims to help people with a specific and rare eye condition called RP2-associated Retinitis Pigmentosa (often shortened to RP2-associated RP). This condition is one of several types of Retinitis Pigmentosa, which causes vision to gradually worsen over time, often starting at a young age. Because it's so rare, doctors and scientists don't yet know enough about how the disease progresses or the best ways to treat it, which makes it very challenging for patients and their families.

This registry is like a safe online database specially built to gather health information from people with RP2-associated RP. By bringing together medical records, genetic test results, and eye scan images from many individuals, researchers at the Institute of Human Genetics Göttingen in Germany hope to learn much more. They want to understand exactly how the disease develops, what different forms it can take, and how changes in the RP2 gene affect vision.

Ultimately, the goal is to use this gathered information to speed up the hunt for new and effective treatments, especially gene therapies, that could help slow down or even stop the progression of RP2-associated RP. This research is crucial because the disease often starts early and gets worse quickly. By joining, you're helping to build a stronger community that can then be offered opportunities to take part in future treatment studies.

Key takeaways

It's an online registry for a rare eye condition: RP2-associated Retinitis Pigmentosa.
Aims to understand the disease better and develop new treatments.
Collects existing medical, genetic, and eye scan data securely.
No new treatments or clinic visits are involved for participants.
Participation helps future gene therapy research.
You can withdraw at any time.

Who may be eligible?

To join the InsightRP2 Registry, you need to meet a couple of simple criteria. Firstly, a doctor must have confirmed that you have RP2-associated Retinitis Pigmentosa through a genetic test. This means they've found a specific change in your RP2 gene that causes the condition. Secondly, you, or your parent or legal guardian if you're under 18, must give your written permission to take part.

There are no age limits – people of all ages who meet the genetic diagnosis can join. The information displayed and forms to be filled out will be in English and German, so you need to be able to understand these languages to take part.

You won't be able to join if your genetic test shows a different cause for your Retinitis Pigmentosa, or if you're unable to provide your consent (or your legal guardian's consent) to share your information. Also, if you can't read and understand the documents in English or German, you won't be able to participate.

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 a confirmed genetic diagnosis of RP2-associated Retinitis Pigmentosa?
Am I (or my legal guardian) willing to provide written consent to join?
Can I read and understand documents in English or German?
Is my Retinitis Pigmentosa not caused by a gene other than RP2?

Answer every question to see your result.

What does participation involve?

If you choose to join the InsightRP2 Registry, you won't need to visit a clinic or take any new medication. Your participation mainly involves sharing existing medical information with the registry. This includes details from your past medical records, results from genetic tests you've already had, and images from any eye scans (like fundus photos or OCT scans).

All of this information is collected securely online. There are no direct assessments or follow-up visits involved as part of the registry itself. The researchers might contact you again in the future if they want to invite you to take part in a new study, but you can always say no. The total duration of your involvement could be ongoing, as the registry aims to collect information over time to better understand the disease's natural course.

Potential risks and benefits

Potential benefits of joining include helping researchers better understand RP2-associated RP, which could lead to new treatments, including gene therapy, that might one day save or improve vision for many. By sharing your information, you are contributing to a vital resource that could accelerate scientific discovery. As your information is collected securely online and does not involve new treatments or procedures, the direct risks are very low; mainly, it involves ensuring your personal data is handled confidentially. You have the full right to withdraw your consent and request your data be removed from the registry at any time, without giving a reason.

Locations (1)

University Medicine Göttingen
Verified postcode
Göttingen, Germany· Recruiting

Common questions

What is RP2-associated Retinitis Pigmentosa?

It's a rare inherited eye condition caused by a change in the RP2 gene. It leads to gradual vision loss, often starting in childhood.

Will I get any treatment if I join this registry?

No, this registry is for collecting information, not for providing treatment. However, it helps find people who might be suitable for future treatment studies.

Is my personal information safe?

Yes, the registry uses a secure online system at the University Medical Center Göttingen to protect your medical details and personal information.

Do I need to travel anywhere to participate?

No, you don't need to travel. The registry is fully online, and you'll share your existing medical information electronically.

Can I leave the registry if I change my mind?

Yes, you can withdraw from the registry at any time without giving a reason. Your participation is completely voluntary.

How to find out more

Nina Bögershausen, MD

insight.rp2@med.uni-goettingen.de +49 (0)551 / 39-69016 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.