Therapeutic Education Using an Internet Application in Hereditary Ichthyosis

NCT03641261 | Completed

• 1 other identifier: RC31/16/8765
• Study Type: interventional
• Target: 42
• Locations: 1 country
• Sites: 1

Brief Summary

The main purpose is to evaluate the feasibility (global use) of a therapeutic patient education program using a specific web application in patients with hereditary ichthyosis.

Conditions

Ichthyosis

Keywords

Hereditary ichthyosis

Outcome Measures

Primary Outcomes (1)

• Global use

  percentage of patients who have used the "WebIchtyose" application for at least 8 hours during 6 months

  6 months

Secondary Outcomes (21)

• Fractional use in each domain (educational sessions)

  6 months

• Fractional use in each domain (continuous educational follow-up)

  6 months

• Fractional use in each domain (consultation)

  6 months

• Fractional use in each domain (questionnaires)

  6 months

• Fractional use in each domain

  6 months

Study Arms (1)

Therapeutic Patient Education program

EXPERIMENTAL

All included patients will follow a Therapeutic Patient Education program dedicated to the hereditary ichthyosis and using a web application, WebIchtyose

Other: Therapeutic patient education program

Interventions

Therapeutic patient education program OTHER

WebIchtyose is a specific therapeutic patient education program for patients with hereditary Ichthyosis targeting the problems of each patient by means of a personalized follow-up and a constant interaction between the patient and the educational team

Also known as: WebIchtyose

Therapeutic Patient Education program

Eligibility Criteria

• Age: 15 Years - 60 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64)

You may qualify if:

• Patient with hereditary ichthyosis, according to the classification established during the 2009 consensus conference
• Who has given his informed consent form
• Who is affiliated to a social security system

You may not qualify if:

• Patient who has already participated in a therapeutic patient education program for the hereditary ichthyosis
• Unable to connect or use a computer tool
• Impossibility to be present at the only face-to-face session
• Patient who is not available for the collective educational session
• Patient not mastering the French language
• Person under legal protection (guardianship, curators or safeguard of justice)

Sponsors & Collaborators

• University Hospital, Toulouse: lead

Study Sites (1)

CHU Toulouse, Hôpital Larrey

Toulouse, 31059, France

Location

MeSH Terms

Conditions

Ichthyosis

Condition Hierarchy (Ancestors)

Skin Abnormalities; Congenital Abnormalities; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Infant, Newborn, Diseases; Keratosis; Skin Diseases; Skin and Connective Tissue Diseases

Study Officials

• Juliette Mazereeuw-Hautier, MD

  University Hospital, Toulouse

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NA
• Masking: NONE
• Purpose: SUPPORTIVE CARE
• Intervention Model: SINGLE GROUP
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: June 4, 2018
• First Posted: August 21, 2018
• Study Start: October 29, 2018
• Primary Completion: February 21, 2023
• Study Completion: February 21, 2023
• Last Updated: April 12, 2024

Record last verified: 2024-04

Locations

FR (1)