An observational study in Primary Immune Deficiency, sponsored by Assistance Publique Hopitaux De Marseille. Status unknown at 1 site in France. Per ClinicalTrials.gov, last updated 2016-08-16.
Sponsored by Assistance Publique Hopitaux De Marseille · Observational
Background: Most children with primary immune deficiency (PID) now reach adulthood. However, few studies have evaluated their health status and health related quality of life (HRQoL).
Objective: To investigate long-term morbidity, the French Reference Center for PIDs initiated a prospective multicenter cohort: the F-CILC (French Childhood Immune deficiency Long-term Cohort). The data collected will be used to assess the physical health condition of patients who reached adulthood and the impact on their quality of life.
Methods: Patients are asked to complete health status questionnaires. A severity score (grade1 ["mild"] to grade 4 ["life-threatening"]) is assigned to each health condition. The HRQoL of patients is compared to age- and sex-matched French normal values using the SF36 HRQoL questionnaire.
Capsule summary. This will be the first study of adult survivors of childhood PID describing how the burden of health conditions affect their quality of life.
204 studies on the registry are indexed under Primary Immunodeficiency Diseases; 47 are open to participants now.
This study's enrollment of 1,780 is above the median of 126 across 75 observational studies indexed under Primary Immunodeficiency Diseases.
Browse Primary Immunodeficiency Diseases studies →Assistance Publique Hopitaux De Marseille is the lead sponsor of 700 studies on the registry; 144 are open to participants now.
Counted across the registry records on this site, refreshed daily.
Patient with primary immune deficiency diagnosed during childhood and followed in refereries center for this desease
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Exclusion Criteria:
Numbers of patient with PID diagnosed during childhood experiencing a heavy burden of health conditions affecting their quality of life
Time frame: 3 years
Plan to share: No
This study is status unknown, as verified in Aug 2016. You cannot join it, but the record below documents what was studied.
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Primary Immunodeficiency Diseases →
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