[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"trial:NCT06234384":3,"trial-entities:NCT06234384":76,"trial-summary:NCT06234384":79},{"id":4,"nct_id":4,"org_study_id":5,"brief_title":6,"official_title":6,"overall_status":7,"completion_date":8,"status_verified_date":9,"last_update_date":10,"start_date":11,"sponsor_name":12,"lead_sponsor_class":13,"has_dmc":14,"brief_summary":15,"detailed_description":16,"conditions":17,"keywords":19,"study_type":20,"primary_purpose":21,"phases":22,"enrollment_info":23,"interventions":26,"primary_outcomes":30,"secondary_outcomes":35,"sex":36,"minimum_age":37,"maximum_age":21,"healthy_volunteers":38,"eligibility_criteria":39,"std_ages":43,"locations":47,"central_contacts":67,"overall_officials":73,"references":74,"see_also_links":75},"NCT06234384","Pro00008556","Foundation for Sarcoidosis Research Advanced Cures Registry (FSR-SARC Registry)","RECRUITING","2033-07","2025-09","2025-09-19","2013-07","Foundation for Sarcoidosis Research","OTHER",false,"The goal of the study is to create a longitudinal record of patient reported outcomes for people living with sarcoidosis that maintains privacy. Patients report on the following: demographics, disease symptoms, diagnostic journey, provider experience, disease treatment, and burden of disease. Patients can also link their Electronic Health Records (EHR). The goal is to create a natural history of sarcoidosis, support research, and better understand the needs of the sarcoidosis community.","Participants review a document, Understanding Your Participation, and check boxes on the Participant Informed Consent document that confirms they understand the risks\u002Fbenefits of participation (or Assent if the patient is a minor age 7-18), they create an online account, and then are asked to complete the baseline survey questionnaire. Participants confirm they understand that their participation is completely voluntary, that their identifying information will be secured and encrypted, their private health information will be stored separately in a secure database. Their private information will never be shared with other people, unless its required by law. The registry may share de-identified information with researchers and other databases. Their personal information will be protected and not shared. They may choose to stop their participation at any time by contacting FSR. They are not required to fill out all the questions and can leave any unanswered. They will be contacted by the registry once a year to update or correct their health information. They can choose to be contacted by FSR if a study becomes available that they may wish to know more about.",[18],"Sarcoidosis",[],"OBSERVATIONAL",null,[],{"count":24,"type":25},6833,"ESTIMATED",[27],{"type":13,"name":28,"description":29},"Sarcoidosis diagnosis","Participants have been diagnosed with sarcoidosis.",[31],{"measure":32,"description":33,"timeFrame":34},"Completed participation in baseline survey","Baseline survey completion","If a survey question is completely blank, a query can be sent to request the subject to complete the section. Subjects will be contacted only twice to attempt to resolve an issue. The timeframe from time to event outcome shall not exceed 6 months.",[],"ALL","7 Years",true,{"inclusion":40,"exclusion":41,"raw_text":42},[],[],"Inclusion Criteria:\n\n1. English speaking\n2. Consent\n3. Sarcoidosi diagnosis -\n\nExclusion Criteria:\n\nNONE",[44,45,46],"CHILD","ADULT","OLDER_ADULT",[48],{"facility":49,"status":7,"city":50,"state":51,"zip":52,"country":53,"contacts":54,"geoPoint":64},"Foundation For Sarcoidosis Research","Chicago","Illinois","60654","United States",[55,60],{"name":56,"role":57,"phone":58,"email":59},"Tricha Shivas, MBe","CONTACT","312-241-0400","tricha@stopsarcoidosis.org",{"name":61,"role":57,"phone":62,"email":63},"Rebecca A Epstein, MPH","312-340-0500","rebecca@stopsarcoidosis.org",{"lat":65,"lon":66},41.85003,-87.65005,[68,72],{"name":69,"role":57,"phone":70,"email":71},"Leslie Serhuck, MD MA Mbioethics","312-341-0500","info@stopsarcoidosis.org",{"name":56,"role":57,"phone":70,"email":59},[],[],[],{"nct_id":4,"conditions":77,"biomarkers":78},[18],[],{"nct_id":4,"found":38,"summary":80,"prompt_version":90},{"design":81,"status":82,"heading":83,"summary":84,"follow_up":85,"word_count":86,"commitments":87,"compensation":88,"drugs_mentioned":89},"This is an observational study aiming to enroll 6833 participants. It is not testing a specific treatment but rather collecting information about sarcoidosis.","completed","FSR-SARC Registry for Sarcoidosis","This study, called the FSR-SARC Registry, is creating a long-term record of experiences for people living with sarcoidosis. It's an observational study, meaning you won't receive any new treatments; instead, you'll share information about your sarcoidosis diagnosis. The goal is to understand the natural course of sarcoidosis, support research, and better meet the needs of the sarcoidosis community. You can join if you are at least 7 years old, speak English, and have a sarcoidosis diagnosis. There are no exclusion criteria. Success for this study means you complete a baseline survey. The current status of the study is unclear, but it plans to enroll 6833 participants.","You will be contacted by the registry once a year to update or correct your health information. The timeframe from time to event outcome shall not exceed 6 months for the primary endpoint.",106,"You will review a document, provide consent, create an online account, and complete a baseline survey questionnaire. You will be contacted once a year to update your health information.","Not stated in the trial record.",[28],"v2"]