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Implementation and Evaluation of a Post-Diagnostic Announcement Protocol at the CRMR RefeRet, Quinze-Vingts Hospital

RecruitingNAAges 18 Years - 65 YearsAllCentre Hospitalier National d'Ophtalmologie des Q…
NCT07292987 on ClinicalTrials.gov ↗
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In plain words

What the trial is, and whether it could suit you

This study explores whether adding early nurse-led and psychological support after the diagnosis of retinitis pigmentosa (RP) can improve patient experience and emotional well-being. RP is a rare, progressive eye disease often diagnosed after a long and difficult process, and receiving the diagnosis can be emotionally distressing. Eighty newly diagnosed adults will be randomly assigned to either usual care or an enhanced pathway that includes early follow-up with a nurse, structured emotional monitoring, and a psychologist visit at six months. The study aims to determine if this structured support improves patient satisfaction and reduces anxiety and depression compared with standard care.

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📋 Eligibility rules (as published)
Inclusion Criteria: * Diagnosed with retinitis pigmentosa (RP) and followed at the Quinze-Vingts Rare Eye Disease Center, with diagnosis made after the project begins * Aged 18 to 65 years * Male or female * French-speaking * Have a phone number * Reside in France Exclusion Criteria: * Pregnant women * Participants enrolled in a therapeutic clinical trial within the past 12 months * Individuals deprived of liberty by judicial or administrative decision * Adults under legal protection or unable to provide informed consent * Individuals with other medical conditions or taking treatments that could interfere with study evaluations
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What it tests

  • Enhanced post-diagnostic support
  • Usual Care
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Where

1 site
Centre Hospitalier National D' Ophtalmologie Des Quinze-Vingts
Paris, France
🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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