[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100394244":3},{"organization":4,"armGroups":7,"interventions":7,"overallOfficials":8,"centralContacts":7,"locations":13,"responsibleParty":25,"collaborators":27,"id":36,"slug":37,"hasResults":38,"nctId":39,"briefTitle":40,"officialTitle":40,"acronym":41,"eligibilityCriteria":42,"healthyVolunteers":38,"sex":43,"minAge":44,"maxAge":7,"enrollmentInfo":45,"targetDuration":7,"studyType":48,"phases":7,"briefSummary":49,"conditions":50,"keywords":52,"overallStatus":58,"whyStopped":7,"lastUpdateSubmitDate":59,"lastUpdatePostDateStruct":60,"startDateStruct":62,"completionDateStruct":64,"leadSponsor":66,"locationsCount":67},{"fullName":5,"class":6},"Argo Sante","OTHER",null,[9],{"name":10,"affiliation":11,"role":12},"Frederic Galacteros, MD,PhD,Prof.","Red Cell genetic diseases unity, Henri Mondor Hospital, Paris","PRINCIPAL_INVESTIGATOR",[14],{"facility":15,"status":7,"city":16,"state":7,"zip":7,"country":17,"countryCode":18,"cosmosGeoPoint":19,"geoPoint":24,"contacts":7},"Centre de références syndromes drépanocytaires majeurs thalassémie et autres maladies rares du globule rouge et de l'érythropoïése","Créteil","France","FR",{"type":20,"coordinates":21},"Point",[22,23],2.46569,48.79266,{"lat":23,"lon":22},{"type":26,"investigatorFullName":7,"investigatorTitle":7,"investigatorAffiliation":7,"oldNameTitle":7,"oldOrganization":7},"SPONSOR",[28,31,33],{"name":29,"class":30},"Filière de santé maladies rares MCGRE","UNKNOWN",{"name":32,"class":30},"Fédération des malades drépanocytaires et thalassémiques SOS Globi",{"name":34,"class":35},"Genetix Biotherapeutics Inc.","INDUSTRY","100394244","evaluation-of-impact-of-disease-on-quality-of-life-education-and-socio-professional-integration-of-adults-and-parents-of-children-living-with-sickle--cell-disease-in-france-100394244",false,"NCT04413539","Evaluation of Impact of Disease on Quality of Life, Education and Socio-professional Integration of Adults and Parents of Children Living with Sickle- Cell Disease in France","DREPAtient","Inclusion Criteria:\n\n* 18 years or older\n* Diagnosed with SCD or parent of a minor child diagnosed with SCD\n* Able to speak and understand French\n* Willing to participate to the study\n\nExclusion Criteria:\n\n* Person having serious difficulties to read or speak French, unable to answer the questions\n* Person suffering from other chronic disease which could bias the representation they have about SCD\n* Patient cured with a bone marrow transplant\n* Patient with mental disorder preventing the patient to understand the study","ALL","18 Years",{"count":46,"type":47},1088,"ACTUAL","OBSERVATIONAL","Sickle cell disease (SCD) is the most common genetic disease in France. Its consequences on patient's life-course and quality of life need to be precisely identified among French patients and their family to be able to improve patients care according to their specific needs.\n\nThe aim of the study is to accurately describe the impact of SCD on quality of life of patients living in France, or their family (for minor patients). The consequences of the disease on professional life, education and material condition of patients or their parents will be described by the patients themselves.",[51],"Sickle-cell Disease (SCD)",[53,54,55,56,57],"Sickle-cell disease","quality of life","education","socio-professional integration","france","COMPLETED","2025-01-27",{"date":61,"type":47},"2025-01-29",{"date":63,"type":47},"2020-06-02",{"date":65,"type":47},"2021-04-27",{"name":5,"class":6},1]