Extra Nurse and Psychologist Support After a Retinitis Pigmentosa Diagnosis
Tests added nurse and psychologist support in adults newly diagnosed with retinitis pigmentosa.
Plain-language title generated from the registry record
Registry title: Implementation and Evaluation of a Post-Diagnostic Announcement Protocol at the CRMR RefeRet, Quinze-Vingts Hospital
Key facts
- Where
- Paris, FranceSee the site
Could this be for you?
Answer for yourself. This is not a decision: only the study team can say whether you can take part.
- Are you between 18 and 65 years old?
Source: NCT07292987, who can take part
Where in France
- Centre Hospitalier National D'ophtalmologie Des Quinze VingtsParis, FranceTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Centre Hospitalier National d'Ophtalmologie des Quinze-Vingts
- Trial code
- NCT07292987
- Record updated
- 10 February 2026
- Original description
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.Read full original descriptionShow less
Implementation and Evaluation of a Post-diagnostic Announcement Protocol at the CRMR RefeRet of the Quinze-Vingts National Ophthalmology Hospital
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.
Inclusion: 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: Individuals with other medical conditions or taking treatments that could interfere with study evaluations; 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.