Early nurse and psychological support after a new retinitis pigmentosa diagnosis
Official title: Implementation and Evaluation of a Post-diagnostic Announcement Protocol at the CRMR RefeRet of the Quinze-Vingts National Ophthalmology Hospital
Run by Centre Hospitalier National d'Ophtalmologie des Quinze-Vingts · NCT07292987 · Data updated 2026-11-12
This program will test whether early nurse follow-up and a psychologist visit for adults newly diagnosed with retinitis pigmentosa improve patient satisfaction and reduce anxiety and depression.
Quick facts
| Study type | Interventional |
|---|---|
| Ages | 18 Years to 65 Years |
| Sex | All |
| Enrollment | 80 (estimated) |
| Sponsor | Centre Hospitalier National d'Ophtalmologie des Quinze-Vingts Academic / other |
| Locations | 1 site (Paris, Île-de-France Region) |
| Status | Recruiting |
| Started | December 1, 2025 |
| Main results expected | January 2028 |
| Study ends | January 2028 |
| Registry record updated | February 10, 2026 |
| Trial ID | NCT07292987 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Adults aged 18–65 who are French-speaking, reside in France, have a phone number, and receive a new retinitis pigmentosa diagnosis at the Quinze-Vingts Rare Eye Disease Center are the intended participants.
✕Probably not a fit
People outside the 18–65 age range, non–French speakers, those living outside France, pregnant individuals, those in recent therapeutic trials, or those with medical conditions that interfere with evaluations may not benefit from this program.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This is a single-center, randomized study at the Quinze-Vingts National Ophthalmology Hospital that enrolls 80 adults newly diagnosed with retinitis pigmentosa and randomly assigns them to usual care or an enhanced post-diagnostic pathway. The enhanced pathway includes nurse-led follow-up at 15 days and six months, structured emotional monitoring with repeated HADS questionnaires, and a psychologist visit at six months. The primary outcome is patient-reported satisfaction at 12 months (PREM), with secondary outcomes measuring changes in anxiety and depression and feasibility feedback from nursing staff. Results will inform the design of sustainable, multidisciplinary post-diagnostic care for rare eye diseases.
Why it matters
Potential benefit: If successful, this approach could increase patient satisfaction and reduce anxiety and depression after diagnosis, improving short-term emotional well-being and care coordination.
How similar studies have gone: Nurse-led and psychological support programs have improved patient experience in other chronic diseases and some ophthalmology settings, but structured post-diagnostic pathways specifically for retinitis pigmentosa are not widely tested.
Who can join: the full rules
Show full inclusion / exclusion criteria
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
Where it's running
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Centre Hospitalier National D' Ophtalmologie Des Quinze-Vingts
Paris, Île-de-France Region, France Recruiting
Study contacts
- Principal investigator: Isabelle Audo, Pr — CRMR Centre Hospitalier National D' Ophtalmologie Des Quinze-Vingts
- Study coordinator: Isabelle AUDO, Pr
- Email: isabelle.audo@inserm.fr
- Phone: +33 0140 02 14 30
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.