NCT04731493|Unknown
Effect on the Quality of Life of a Therapeutic Education Program in Patients With Marfan Syndrome
MYLIFE
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MYLIFE
Sponsor study identifier
observational
60
1 country
1
Study Start
December 2, 2020
Actual (reported)Primary Completion
January 31, 2024
Estimated (date passed)This estimate has passed. The registry has not confirmed an actual date for this milestone.
Study Completion
January 31, 2024
Estimated (date passed)This estimate has passed. The registry has not confirmed an actual date for this milestone.
This is a before-after, observational, prospective, multicenter cohort study. The study will consist of 2 phases: an initial observational phase of a minimum of 3 months before the Therapeutic Education Program (TEP) intervention, then a phase of evolution analysis of at least 3 months.
Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.
January 31, 2024
Estimated (date passed)This estimate has passed. The registry has not confirmed an actual date for this milestone.
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Some registry-reported names shown below are not yet linked in this graph.
Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.
December 2, 2020
Actual (reported)December 3, 2020
Actual (reported)February 1, 2021
Actual (reported)January 31, 2024
Estimated (date passed)This estimate has passed. The registry has not confirmed an actual date for this milestone.
January 31, 2024
Estimated (date passed)This estimate has passed. The registry has not confirmed an actual date for this milestone.
quality of life of children and young adults with Marfan
Answer to the question of PedsQL
Base line
quality of life of children and young adults with Marfan syndrome after therapeutic education program (ETP),
Answer to the question of PedsQL
3 months
quality of life of children and young adults with Marfan syndrome after therapeutic education program (ETP),
Answer to the question of PedsQL
9 months
quality of life of children and young adults with Marfan syndrome after therapeutic education program (ETP),
Answer to the question of PedsQL
12 months
individual and group sessions will be set up with educational workshops specialized by age group (child / adolescent / transition / adult / entourage / parents), socio-administrative workshops, etc. The objectives will be adapted to each age group and to each patient individually.
* needs assessment * educational group workshop * specialized workshops by age group: child / adolescent / transition / adult / entourage / separated parents and in parallel * socio-administrative workshop * individual summary (accompanied or not by his entourage / family) * satisfaction questionnaire
Registry-reported names are shown in full. Names without a link have not yet been matched to a Syfrah profile.
Patient with Marphan Syndrom
UHToulouse
Toulouse, 31000, France
Yves DULAC, MD
University Hospital, Toulouse
First Submitted
December 3, 2020
First Posted
February 1, 2021
Study Start
December 2, 2020
Actual (reported)Primary Completion
January 31, 2024
Estimated (date passed)This estimate has passed. The registry has not confirmed an actual date for this milestone.
Clinical Signs and Activity Limitations Associated With Dural Ectasia in Patients With Marfan Disease
Contact the study team to confirm eligibility.
Study Completion
January 31, 2024
Estimated (date passed)This estimate has passed. The registry has not confirmed an actual date for this milestone.
Last Updated
February 1, 2021
Record last verified: 2021-01
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Source: ClinicalTrials.gov.
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