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Retinitis pigmentosa

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Cure status

Closest to patients

  1. Role of UC-MSC and CM to Inhibit Vision Loss in Retinitis Pigmentosa Phase I/IIPhase 2/3 trial: 1.5 x 10^6 UC-MSC + CM, 5 x 10^6 UC-MSC + CMPT. Prodia Stem Cell Indonesia (sponsor) · 1 hospital in IndonesiaPhase 2/3Results expected 2027
  2. A Multicenter, Randomized, Double-Blind, Controlled Clinical Study of Minocycline for the Treatment of Retinitis PigmentosaPhase 3 trial: MinocyclineZhongshan Ophthalmic Center,Sun Yat-Sen University · Guangzhou, ChinaPhase 3Results expected 2028
  3. Study to Evaluate the Efficacy of a Single Intravitreal Injection of RTx-015 in Participants With Retinitis Pigmentosa (PERCEPT)Phase 2/3 trial: RTx-015Ray Therapeutics, Inc. (sponsor) · 14 hospitals in United StatesPhase 2/3Results expected 2028

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If you are looking for a relative

Here you will find questions you can ask, help with difficult talks, organisations for carers and your relative's rights.

Questions for your relative's doctor

How do I talk to them about this?

You do not need the right words. Ask what your relative wants to know, and let them set the pace. These pages can help.

Support for you as a carer

Looking after someone is work too. These organisations help carers, and the list further down this page shows helplines by country.

Organisations on this page

Power of attorney and patient rights, by country

A doctor can share information and a relative can act only with the patient's consent or a legal authority. It is easier to arrange this early.

If you are looking for your child

Children are often treated differently from adults, in specialist centres. Here is where to start.

Before you pay

Parents often receive offers of paid treatment. Please go through this list before you pay for anything.

Open the before-you-pay list

For patient organisations

You can share or print these pages for your members. They are free and need no account.

Apply for experimental treatment or a research study

The trial team decides who can take part; your doctor can help you ask.

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Latest news

Results, new trials and publications, newest first. Every item links to its source.

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New and changed trials of the last 30 days, without an account and without tracking.

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Tools for your next step

Questions for your doctor

Pick up to 5 questions for your situation, then print them or take them on your phone.

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Used an AI to ask about this?

Five questions that help you check the answer.

See the five questions

Organisations that can help

Helplines, patient groups and support services for you and your family.

Select your country to see the organisations there, starting with the ones closest to you.

Umbrella organisations (they connect national groups)

  • European Blind Union

    European umbrella of national organisations of blind and partially sighted people; advocacy on accessibility, Marrakesh Treaty, braille, mobility; news, webinars, podcasts.

    Europe

    Visit site: European Blind Union
  • EURORDIS – Rare Diseases Europe

    Alliance of over 1,000 rare disease patient organisations, with a list of rare disease helplines by country.

    Europe

    Visit site: EURORDIS – Rare Diseases Europe
  • Retina International

    Global umbrella of patient organisations for inherited and acquired retinal conditions (incl. retinitis pigmentosa, AMD); condition information, patient resources, research and advocacy.

    International

    Visit site: Retina International
  • World Blind Union

    Global umbrella of organisations of blind and partially sighted people; advocacy on accessibility, Marrakesh Treaty, braille literacy, inclusive development; scholarships and awards.

    International

    Visit site: World Blind Union

General support

For anyone who is ill, whatever the disease: patients' rights and legal aid, crisis lines, hospice and palliative care, care in another EU country, and patient organisations' umbrella bodies.

International

Frontlight is not affiliated with these organisations; we list them because they help.

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Find fellow researchers

Groups with active Retinitis pigmentosa work.

University of Tübingen

Tübingen, Germany

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University College London

London, United Kingdom

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Harvard University

Cambridge, United States

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University of Oxford

Oxford, United Kingdom

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Radboud University Medical Center

Nijmegen, Netherlands

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Centre National de la Recherche Scientifique

Paris, France

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University of Basel

Basel, Switzerland

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Chinese Academy of Medical Sciences & Peking Union Medical College

Beijing, China

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Moorfields Eye Hospital

London, United Kingdom

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Massachusetts Eye and Ear Infirmary

Boston, United States

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Institute of Molecular and Clinical Ophthalmology Basel

Basel, Switzerland

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