[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"trial:NCT03489278":3,"trial-entities:NCT03489278":213,"trial-summary:NCT03489278":217},{"id":4,"nct_id":4,"org_study_id":5,"brief_title":6,"official_title":7,"overall_status":8,"completion_date":9,"status_verified_date":10,"last_update_date":11,"start_date":12,"sponsor_name":13,"lead_sponsor_class":14,"has_dmc":15,"brief_summary":16,"detailed_description":17,"conditions":18,"keywords":23,"study_type":24,"primary_purpose":25,"phases":26,"enrollment_info":27,"interventions":30,"primary_outcomes":31,"secondary_outcomes":35,"sex":36,"minimum_age":37,"maximum_age":25,"healthy_volunteers":15,"eligibility_criteria":38,"std_ages":46,"locations":49,"central_contacts":204,"overall_officials":209,"references":211,"see_also_links":212},"NCT03489278","20170785","Clinical Procedures to Support Research in ALS","Clinical Procedures to Support Research in ALS (CAPTURE-ALS)","RECRUITING","2034-06","2026-06","2026-06-15","2018-02-15","University of Miami","OTHER",false,"The purpose of the Clinical Procedures To Support Research (CAPTURE) study is to utilize information collected in the medical record to learn more about a disease called amyotrophic lateral sclerosis (ALS) and related disorders.","The study will consent patients with ALS or related disorders that are receiving care at a clinical center in the CReATe consortium that uses Epic as its electronic health record (EHR) system. The study aims to systematically gather a clinical dataset through the EHR using a standardized approach to characterize the natural history of ALS and related diseases.",[19,20,21,22],"Amyotrophic Lateral Sclerosis","ALS-Frontotemporal Dementia","Primary Lateral Sclerosis","Progressive Muscular Atrophy",[],"OBSERVATIONAL",null,[],{"count":28,"type":29},1200,"ESTIMATED",[],[32],{"measure":33,"timeFrame":34},"Using the ALS Toolkit for collecting and using electronic health record data for research purposes","12 months",[],"ALL","18 Years",{"inclusion":39,"exclusion":43,"raw_text":45},[40,41,42],"Diagnosis of ALS or a related disorder (e.g. primary lateral sclerosis, progressive muscular atrophy).","Receiving care at a clinical center that uses Epic as its EHR.","Able and willing to provide informed consent (or informed consent obtainable from a designated proxy).",[44],"Inability to understand English and\u002For Spanish","Inclusion Criteria:\n\n* Diagnosis of ALS or a related disorder (e.g. primary lateral sclerosis, progressive muscular atrophy).\n* Receiving care at a clinical center that uses Epic as its EHR.\n* Able and willing to provide informed consent (or informed consent obtainable from a designated proxy).\n\nExclusion Criteria:\n\n* Inability to understand English and\u002For Spanish",[47,48],"ADULT","OLDER_ADULT",[50,68,82,96,110,125,140,148,162,176,190],{"facility":51,"status":8,"city":52,"state":53,"zip":54,"country":55,"contacts":56,"geoPoint":65},"University of California, Irvine","Irvine","California","92868","United States",[57,62],{"name":58,"role":59,"phone":60,"email":61},"Pola Gaid","CONTACT","657-233-1122","polagaid@hs.uci.edu",{"name":63,"role":64},"Namita Goyal, MD","PRINCIPAL_INVESTIGATOR",{"lat":66,"lon":67},33.66946,-117.82311,{"facility":69,"status":8,"city":70,"state":53,"zip":71,"country":55,"contacts":72,"geoPoint":79},"Stanford University","Palo Alto","94304",[73,77],{"name":74,"role":59,"phone":75,"email":76},"Rabia Farooquee","650-709-8735","rfarooquee@stanford.edu",{"name":78,"role":64},"Mawell Greene, MD",{"lat":80,"lon":81},37.44188,-122.14302,{"facility":83,"status":8,"city":84,"state":53,"zip":85,"country":55,"contacts":86,"geoPoint":93},"California Pacific Medical Center","San Francisco","94115",[87,91],{"name":88,"role":59,"phone":89,"email":90},"Chow Saephanh","415-600-3935","SaephaC@cpmcri.org",{"name":92,"role":64},"Jonathan Katz, MD",{"lat":94,"lon":95},37.77493,-122.41942,{"facility":13,"status":8,"city":97,"state":98,"zip":99,"country":55,"contacts":100,"geoPoint":107},"Miami","Florida","33136",[101,105],{"name":102,"role":59,"phone":103,"email":104},"Jessica Hernandez","305-243-2345","jph93@miami.edu",{"name":106,"role":64},"Michael Benatar, MBChB, MS, DPhil",{"lat":108,"lon":109},25.77427,-80.19366,{"facility":111,"status":8,"city":112,"state":113,"zip":114,"country":55,"contacts":115,"geoPoint":122},"University of Kansas Medical Center","Kansas City","Kansas","66205",[116,120],{"name":117,"role":59,"phone":118,"email":119},"Osvaldo Plascencia","913-945-9922","oplascencia@kumc.edu",{"name":121,"role":64},"Jeffrey Statland, MD",{"lat":123,"lon":124},39.11417,-94.62746,{"facility":126,"status":8,"city":127,"state":128,"zip":129,"country":55,"contacts":130,"geoPoint":137},"Hennepin County Medical Center","Minneapolis","Minnesota","55404",[131,135],{"name":132,"role":59,"phone":133,"email":134},"Daphne Fruchtman","612-873-2607","DFruchtman@hhrinstitute.org",{"name":136,"role":64},"Samuel Maiser, MD",{"lat":138,"lon":139},44.97997,-93.26384,{"facility":141,"status":142,"city":143,"state":143,"zip":144,"country":55,"geoPoint":145},"Columbia University","ACTIVE_NOT_RECRUITING","New York","10032",{"lat":146,"lon":147},40.71427,-74.00597,{"facility":149,"status":8,"city":150,"state":151,"zip":152,"country":55,"contacts":153,"geoPoint":159},"Duke University","Durham","North Carolina","27708",[154,157],{"name":155,"role":59,"email":156},"Hailey Zampa","hailey.zampa@duke.edu",{"name":158,"role":64},"Xiaoyan Li",{"lat":160,"lon":161},35.99403,-78.89862,{"facility":163,"status":8,"city":164,"state":151,"zip":165,"country":55,"contacts":166,"geoPoint":173},"Wake Forest University","Winston-Salem","27157",[167,171],{"name":168,"role":59,"phone":169,"email":170},"Lauren Richmond","336-716-9632","lauren.richmond@advocatehealth.org",{"name":172,"role":64},"James Caress, MD",{"lat":174,"lon":175},36.09986,-80.24422,{"facility":177,"status":8,"city":178,"state":179,"zip":180,"country":55,"contacts":181,"geoPoint":187},"Providence Health & Services","Portland","Oregon","97213",[182,185],{"name":183,"role":59,"email":184},"Angela Phan","angelina.phan@providence.org",{"name":186,"role":64},"Nicholas Olney, MD",{"lat":188,"lon":189},45.52345,-122.67621,{"facility":191,"status":8,"city":192,"state":193,"zip":194,"country":55,"contacts":195,"geoPoint":201},"University of Texas San Antonio Health Science Center","San Antonio","Texas","78229",[196,199],{"name":197,"role":59,"email":198},"Randee Kent-Baron","kentbaron@uthscsa.edu",{"name":200,"role":64},"Carlayne Jackson, MD",{"lat":202,"lon":203},29.42412,-98.49363,[205,208],{"name":106,"role":59,"phone":206,"email":207},"1-844-837-1031","projectcreate@miami.edu",{"name":102,"role":59,"phone":206,"email":207},[210],{"name":106,"affiliation":13,"role":64},[],[],{"nct_id":4,"conditions":214,"biomarkers":216},[19,215,21,22],"Frontotemporal Dementia",[],{"nct_id":4,"found":218,"summary":219,"prompt_version":229},true,{"design":220,"status":221,"heading":222,"summary":223,"follow_up":224,"word_count":225,"commitments":226,"compensation":227,"drugs_mentioned":228},"This is an observational study, meaning no interventions are being tested. It plans to include up to 1200 participants.","completed","Observational Study for ALS and Related Disorders","This study, called CAPTURE, is looking at information already collected in your medical records to better understand amyotrophic lateral sclerosis (ALS) and related conditions like primary lateral sclerosis and progressive muscular atrophy. Researchers are not testing any new treatments or interventions. Instead, they are using a standardized approach to gather health information from electronic health records (EHRs) to learn about how these diseases progress over time. You may be able to join if you have ALS or a related disorder, are 18 or older, receive care at a clinic that uses Epic for its EHR, and can provide informed consent. The study aims to see how well a specific toolkit works for collecting and using this health record data for research over 12 months. The current status of this study is unclear.","The primary endpoint is measured at 12 months, which suggests a follow-up period of at least that long.",132,"Not specified in the trial record.","Not stated in the trial record.",[],"v2"]