Rationalization of the Treatment Pathway of Patient Suffering From Rare Skin Disease With Telemedicine

Study Overview
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Brief Summary
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The investigators want to demonstrate that a new organization with telemedicine could rationalize the treatment pathway of patient suffering from rare skin disease. A diagnosis and a personalised treatment pathway could be performed before the consultation in the hospital.

Official Title
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Rationalization of the Treatment Pathway of Patient Suffering From Rare Skin Disease With Telemedicine

Conditions
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Skin Disease

Intervention / Treatment
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* Procedure: telemedicine


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: New patients suffering from a rare skin disease whatever pathology or age, which needs a take-over by this centre Or patients already take-over by the centre but lost to follow-up for more than one year Patients (and/or parents) who give their consents Patients (and/or parents) able to fill in questionnaires Exclusion Criteria: Pregnant or breast-feeding women. Patients subject to a judicial safeguard order Patients who need an emergency take-over Patients followed by a doctor who does not have a computerized system or refuse to send data via the secured messaging
Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Design Details

Primary Purpose: Supportive Care
Allocation: Randomized
Intervention Model: Parallel Assignment
Masking: None (Open Label)


Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| No Intervention: normal care<br>patient who will have normal treatment pathway | |
| Experimental: telemedicine<br>patient who will have telemedicine | Procedure: telemedicine<br>* treatment pathway organized by telemedicine<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Number of hospital visits | Interest of a procedure of telemedicine on the organization of the treatment pathway of patients affected by rare skin diseases in terms of change of the number of visit in hospital. | 6 months | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Improvement of the treatment pathway and its organization | Traceability in the information system by composite criteria : number of completed application forms, number of meeting per month, number of meeting a month, number of patients treated a month, time dedicated to the logistical coordination (collection by sheets of weekly time) and number of new patients per month. | 6 months | 
| Satisfaction of the patient | questionnaire of satisfaction Short Form-36 Health Survey (SF36) | 6 months | 
| Change of the cost related to the patient care (direct and indirect). | Composite criteria with number of consultations and hospitalizations, number of visit in hospital and number of days of work and school absenteeism. | 6 months | 
| management of time by the medical personal. | collection by sheets of weekly time | 6 months | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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skin disease, telemedicine