Implementation and Evaluation of a Post-diagnostic Announcement Protocol at the CRMR RefeRet of the Quinze-Vingts National Ophthalmology Hospital

Status: Recruiting
Location: See location...
Intervention Type: Behavioral
Study Type: Interventional
Study Phase: Not Applicable
SUMMARY

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.

Eligibility
Participation Requirements
Sex: All
Minimum Age: 18
Maximum Age: 65
Healthy Volunteers: f
View:

• 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

Locations
Other Locations
France
Centre Hospitalier National D' Ophtalmologie Des Quinze-Vingts
RECRUITING
Paris
Contact Information
Primary
Isabelle AUDO, Pr
isabelle.audo@inserm.fr
+33 0140 02 14 30
Backup
Benoit Blanchard
bblanchard@15-20.fr
+33 0140021430
Time Frame
Start Date: 2025-12-01
Estimated Completion Date: 2028-01
Participants
Target number of participants: 80
Treatments
Active_comparator: Usual care group
Experimental: Enhanced care group
Sponsors
Leads: Centre Hospitalier National d'Ophtalmologie des Quinze-Vingts

This content was sourced from clinicaltrials.gov