[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"trial:NCT05955014":3,"trial-entities:NCT05955014":70,"trial-summary:NCT05955014":74},{"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":27,"secondary_outcomes":31,"sex":32,"minimum_age":33,"maximum_age":21,"healthy_volunteers":14,"eligibility_criteria":34,"std_ages":40,"locations":43,"central_contacts":61,"overall_officials":64,"references":66,"see_also_links":67},"NCT05955014","2022-0665","Data Collection Protocol for Patients With Von Hippel Lindau Disease","RECRUITING","2026-12-31","2026-06","2026-06-26","2023-08-24","M.D. Anderson Cancer Center","OTHER",false,"To collect information from patients with vHL disease. Information collected will include data on the status of the disease, any surgeries or therapies patients have received for vHL disease, and quality of life.","Primary Objectives:\n\n* Obtain prospective and retrospective data on lesion development, surgical history and systemic therapy use in patients with vHL disease\n* Assess genotype-phenotype correlation between VHL mutation type and patterns of lesion development\n* Assess genotype-phenotype correlation for response to belzutifan in an organ-specific manner\n\nSecondary Objectives:\n\n--Obtain quality of life data in patients with vHL disease",[18],"Von Hippel Lindau Disease",[],"OBSERVATIONAL",null,[],{"count":24,"type":25},125,"ESTIMATED",[],[28],{"measure":29,"timeFrame":30},"Progression-free survival (PFS)","through study completion; an average of 1 year",[],"ALL","18 Years",{"inclusion":35,"exclusion":38,"raw_text":39},[36,37],"Presence of genetic confirmation or clinical criteria consistent with vHL disease.","Ability to understand and the willingness to sign a written informed consent document.",[],"Inclusion Criteria:\n\n* Presence of genetic confirmation or clinical criteria consistent with vHL disease.\n* Ability to understand and the willingness to sign a written informed consent document.\n\nExclusion Criteria:\n\n• Patients with psychiatric illness\u002Fsocial situations that would limit compliance with study requirements.",[41,42],"ADULT","OLDER_ADULT",[44],{"facility":45,"status":7,"city":46,"state":47,"zip":48,"country":49,"contacts":50,"geoPoint":58},"M D Anderson Cancer Center","Houston","Texas","77030","United States",[51,56],{"name":52,"role":53,"phone":54,"email":55},"Eric Jonasch, MD","CONTACT","713-563-7232","ejonasch@mdanderson.org",{"name":52,"role":57},"PRINCIPAL_INVESTIGATOR",{"lat":59,"lon":60},29.76328,-95.36327,[62],{"name":52,"role":53,"phone":63,"email":55},"(713) 563-7232",[65],{"name":52,"affiliation":55,"role":57},[],[68],{"label":45,"url":69},"http:\u002F\u002Fwww.mdanderson.org",{"nct_id":4,"conditions":71,"biomarkers":73},[72],"Von Hippel Lindau Syndrome",[],{"nct_id":4,"found":75,"summary":76,"prompt_version":86},true,{"design":77,"status":78,"heading":79,"summary":80,"follow_up":81,"word_count":82,"commitments":83,"compensation":84,"drugs_mentioned":85},"This is an observational study, meaning researchers will collect information without giving any specific treatments. It aims to enroll 125 participants.","completed","Data Collection for Von Hippel Lindau Disease","This study is collecting information from people with Von Hippel Lindau (vHL) disease. The goal is to learn more about how vHL disease develops, what treatments (like surgeries or therapies) people receive, and how it affects their quality of life. Researchers will gather data on how lesions (growths) appear, past surgeries, and the use of a drug called belzutifan. They also want to see if there's a link between your specific vHL gene change and how the disease progresses or how you respond to belzutifan. You can join if you are 18 or older, have a confirmed diagnosis of vHL disease, and are willing to sign a consent form. The study will track how your disease progresses over an average of one year.","Participants will be followed through study completion, which is an average of one year, to track progression-free survival (PFS).",123,"Not specified in the trial record.","Not stated in the trial record.",[],"v2"]