Determinants of Health Status and Quality of Life in Patients With Primary Immunodeficiencies Inhereted Diagnosed During Childhood
NCT ID: NCT02868333
Last Updated: 2016-08-16
Study Results
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Basic Information
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UNKNOWN
1780 participants
OBSERVATIONAL
2012-05-31
2017-01-31
Brief Summary
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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.
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Detailed Description
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Conditions
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Study Design
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COHORT
PROSPECTIVE
Eligibility Criteria
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Inclusion Criteria
Exclusion Criteria
ALL
No
Sponsors
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Assistance Publique Hopitaux De Marseille
OTHER
Responsible Party
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Principal Investigators
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Urielle DESALBRES
Role: STUDY_DIRECTOR
Assistance Publique Hôpitaux de Marseille
Vincent BARLOGIS, MD
Role: PRINCIPAL_INVESTIGATOR
Assistance Publique Hôpitaux de Marseille
Locations
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Assistance Publique Hôpitaux de Marseille
Marseille, , France
Countries
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References
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Barlogis V, Mahlaoui N, Auquier P, Fouyssac F, Pellier I, Vercasson C, Allouche M, De Azevedo CB, Moshous D, Neven B, Pasquet M, Jeziorski E, Aladjidi N, Thomas C, Gandemer V, Mazingue F, Picard C, Blanche S, Michel G, Fischer A. Burden of Poor Health Conditions and Quality of Life in 656 Children with Primary Immunodeficiency. J Pediatr. 2018 Mar;194:211-217.e5. doi: 10.1016/j.jpeds.2017.10.029. Epub 2017 Dec 6.
Other Identifiers
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2012-A00338-35
Identifier Type: OTHER
Identifier Source: secondary_id
2012-10
Identifier Type: -
Identifier Source: org_study_id
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