Life Quality Study for PFAPA Patient (PFAPA)

February 6, 2023 updated by: Véronique Hentgen, Versailles Hospital
This cohort study aims to assess the quality of life (or welfare) related to the health of children and adolescents with an non genetics auto-inflammatory disease PFAPA or Marshall syndrome to compare it to children or adolescents with recurrent fever genetics of Familial Mediterranean fever (FMF) in order to improve their overall care.

Study Overview

Status

Completed

Conditions

Intervention / Treatment

Study Type

Observational

Enrollment (Actual)

60

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Locations

  • France
      • Le Chesnay, France
        • Centre Hospitalier de Versailles
      • Paris, France
        • CH de Bicêtre

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

2 years to 18 years (ADULT, CHILD)

Accepts Healthy Volunteers

No

Genders Eligible for Study

All

Sampling Method

Probability Sample

Study Population

Patients with PFAPA syndrome compare to patient with FMF syndrome

Description

Inclusion Criteria:

  • PFAPA syndrome patients or FMF patients

Exclusion Criteria:

  • Participation refusal

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

  • Observational Models: Cohort
  • Time Perspectives: Prospective

Cohorts and Interventions

Group / Cohort
Intervention / Treatment
PFAPA group
Life quality for PFAPA patient report by themselves or parent
Other: Quality of life
Quality of life
FMF group
Life quality for FMF patient report by themselves or parent
Other: Quality of life
Quality of life

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Time Frame
Compare quality of life from patients with PFAPA and FMF, reported by parents and by patients themselves
Time Frame: 1 day
1 day

Secondary Outcome Measures

Outcome Measure
Time Frame
Evaluate the fatigue status of patients through questionnaire PedsQL TM 3.0 multidimensional scale tiredness
Time Frame: 1 day
1 day

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

Versailles Hospital

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start

July 1, 2015

Primary Completion (ACTUAL)

December 1, 2016

Study Completion (ACTUAL)

April 1, 2017

Study Registration Dates

First Submitted

June 15, 2016

First Submitted That Met QC Criteria

June 22, 2016

First Posted (ESTIMATE)

June 23, 2016

Study Record Updates

Last Update Posted (ACTUAL)

February 8, 2023

Last Update Submitted That Met QC Criteria

February 6, 2023

Last Verified

February 1, 2023

More Information

Terms related to this study

Other Study ID Numbers

  • P15/13_PFAPA

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

Clinical Trials on PFAPA Syndrome

Clinical Trials on Quality of life

Search Similar Trials

Sponsors and Collaborators

Medical Conditions

Drug Interventions

CROs by country

CROs in Gabon

Conditions

Rare Diseases

Drug Interventions

Dietary Supplements

Sponsor/Collaborators

Locations

Subscribe