[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100616185":3},{"organization":4,"armGroups":7,"interventions":19,"overallOfficials":10,"centralContacts":26,"locations":37,"responsibleParty":77,"collaborators":10,"id":79,"slug":80,"hasResults":81,"nctId":82,"briefTitle":83,"officialTitle":84,"acronym":85,"eligibilityCriteria":86,"healthyVolunteers":81,"sex":87,"minAge":88,"maxAge":10,"enrollmentInfo":89,"targetDuration":10,"studyType":92,"phases":10,"briefSummary":93,"conditions":94,"keywords":96,"overallStatus":40,"whyStopped":10,"lastUpdateSubmitDate":101,"lastUpdatePostDateStruct":102,"startDateStruct":105,"completionDateStruct":107,"leadSponsor":109,"locationsCount":110},{"fullName":5,"class":6},"Istituto Auxologico Italiano","OTHER",[8,14],{"label":9,"type":10,"description":11,"interventionNames":12},"ALS Patients with C9orf72 Mutation",null,"Survey to describe the various aspects related to the care, needs and quality of life of C9orf72 ALS patients",[13],"Other: Survey for ALS patients",{"label":15,"type":10,"description":16,"interventionNames":17},"Caregivers","Survey to describe the various aspects related to the care and time commitment for the assistance given by caregivers to C9orf72 ALS patients",[18],"Other: Survey for Caregivers",[20,23],{"type":6,"name":21,"description":11,"armGroupLabels":22,"otherNames":10},"Survey for ALS patients",[9],{"type":6,"name":24,"description":16,"armGroupLabels":25,"otherNames":10},"Survey for Caregivers",[15],[27,33],{"name":28,"role":29,"phone":30,"phoneExt":31,"email":32},"Vincenzo Silani, Prof.","CONTACT","+3902619111","2937","vincenzo.silani@unimi.it",{"name":34,"role":29,"phone":30,"phoneExt":35,"email":36},"Luca Grappiolo","2894","luca.grappiolo@auxologico.it",[38,55,65],{"facility":39,"status":40,"city":41,"state":42,"zip":43,"country":44,"countryCode":45,"cosmosGeoPoint":46,"geoPoint":51,"contacts":52},"Istituto Auxologico Italiano IRCCS","RECRUITING","Milan","Lombardy","20145","Italy","IT",{"type":47,"coordinates":48},"Point",[49,50],9.18951,45.46427,{"lat":50,"lon":49},[53],{"name":28,"role":29,"phone":54,"phoneExt":31,"email":32},"+39-02619111",{"facility":56,"status":57,"city":41,"state":10,"zip":10,"country":44,"countryCode":45,"cosmosGeoPoint":58,"geoPoint":60,"contacts":61},"IRCCS Ospedale San Raffaele","NOT_YET_RECRUITING",{"type":47,"coordinates":59},[49,50],{"lat":50,"lon":49},[62],{"name":63,"role":29,"phone":10,"phoneExt":10,"email":64},"Massimo Filippi, MD","filippi.massimo@hsr.it",{"facility":66,"status":57,"city":67,"state":10,"zip":10,"country":44,"countryCode":45,"cosmosGeoPoint":68,"geoPoint":72,"contacts":73},"IRCCS Fondazione Mondino, Istituto Neurologico Nazionale a Carattere Scientifico","Pavia",{"type":47,"coordinates":69},[70,71],9.15917,45.19205,{"lat":71,"lon":70},[74],{"name":75,"role":29,"phone":10,"phoneExt":10,"email":76},"Luca Diamanti, MD","luca.diamanti@mondino.it",{"type":78,"investigatorFullName":10,"investigatorTitle":10,"investigatorAffiliation":10,"oldNameTitle":10,"oldOrganization":10},"SPONSOR","100616185","needs-of-als-patients-with-c9orf72-mutation-and-their-caregivers-100616185",false,"NCT07302321","Needs of ALS Patients With C9orf72 Mutation and Their Caregivers","Investigation Into the Needs of ALS Patients With C9orf72 Mutation and Their Caregivers","C9survALS","ALS Patients:\n\nInclusion Criteria:\n\n* Diagnosis of ALS with mutation C9orf72 (C9Pos)\n* Age 18 years or older\n* Fluency in Italian language\n* Ability to understand the nature of the study and to reply to the questions in the online survey\n* Informed consent signed\n\nExclusion Criteria:\n\n* Clinically relevant cognitive dysfunction\n* Incapacity to reply to at least half of the questions of the online survey\n* Hospital Anxiety and Depression Scale (HADS) ≥ 11\n\nCaregivers:\n\nInclusion Criteria:\n\n* Caregiver of patient with diagnosis of ALS with mutation C9orf72 (C9Pos), who participates in this study\n* Age 18 years or older\n* Preserved cognitive functions\n* Informed consent signed","ALL","18 Years",{"count":90,"type":91},208,"ESTIMATED","OBSERVATIONAL","Individuals with Amyotrophic Lateral Sclerosis (ALS) carrying the C9orf72 HRE mutation (C9Pos) often exhibit different phenotypic traits compared to other patients (C9Neg), presenting a more aggressive form of the disease, with also a higher frequency of comorbidity with frontotemporal dementia (ALS-FTD) and a greater prevalence of family history of ALS and\u002For other neurodegenerative diseases.\n\nConsidering these characteristics (comorbidity with FTD and family history of ALS and\u002For other neurodegenerative pathologies) as factors that have their importance from an assistance point of view, both C9orf72 patients and their caregivers may have particular needs in several respects, and in this sense this investigation is configured.\n\nThis survey aims to describe the various aspects related to the care and quality of life of C9orf72 ALS patients and their respective caregivers, with the goal of identifying actionable steps to improve the quality of life for both.",[95],"Amyotrophic Lateral Sclerosis",[95,97,98,99,100],"C9orf72 mutation","Quality of life","Social Care Needs","Caregiver","2026-02-03",{"date":103,"type":104},"2026-02-04","ACTUAL",{"date":106,"type":104},"2025-10-01",{"date":108,"type":91},"2026-06-30",{"name":5,"class":6},3]