[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-studies-list:{\"conditionNormalized\":\"birt-hogg-dube-syndrome\",\"overallStatus\":[\"RECRUITING\",\"AVAILABLE\",\"NOT_YET_RECRUITING\"],\"orderBy\":\"LastUpdateSubmitDate:desc\",\"size\":25,\"offset\":0}":3,"health-study-condition:birt-hogg-dube-syndrome":29},{"pageToken":4,"total":5,"offset":6,"count":5,"results":7},null,2,0,[8,46],{"id":9,"slug":10,"hasResults":11,"nctId":12,"briefTitle":13,"officialTitle":14,"acronym":4,"eligibilityCriteria":15,"healthyVolunteers":11,"sex":16,"minAge":4,"maxAge":4,"enrollmentInfo":17,"targetDuration":4,"studyType":20,"phases":4,"briefSummary":21,"conditions":22,"keywords":4,"overallStatus":33,"whyStopped":4,"lastUpdateSubmitDate":34,"lastUpdatePostDateStruct":35,"startDateStruct":38,"completionDateStruct":40,"leadSponsor":42,"locationsCount":45},"100541475","qualitative-study-in-patients-with-genodermatoses-and-healthcare-professionals-on-reproductive-counselling-100541475",false,"NCT06330350","Qualitative Study in Patients With Genodermatoses and Healthcare Professionals on Reproductive Counselling","Investigating Perspectives of Patients With Genodermatosis and Healthcare Professionals on Reproductive Counselling","Inclusion Criteria:\n\n* Adult patients with genodermatosis (i.e, keratinisation disorders, skin fragility diseases, ectodermal dysplasias, dermato-oncological syndromes, other genodermatoses) and a desire to have children, with if applicable his or her partner with a desire to have children\n* Patients with clinically and molecularly confirmed variant of a genodermatosis\n* Health care professionals involved with the care of genodermatology patients (e.g. clinical geneticists, dermatologists)\n\nExclusion Criteria:\n\n* Not being able to communicate verbally in Dutch or English","ALL",{"count":18,"type":19},25,"ESTIMATED","OBSERVATIONAL","The goal of this observational study is to understand the perspectives and needs of patients with genodermatoses and their partners who wish to have children, regarding their decision-making process and their consideration of reproductive options. Additionally, the investigators aim to investigate the level of knowledge and perspectives of healthcare professionals (such as clinical geneticists, dermatologists and other clinicians involved), and want to explore to what extent patients and their partners are well informed about these reproductive options. To achieve this, the investigators will conduct individual semi-structured qualitative interviews with participants affected by genodermatoses (and their partners) and with healthcare professionals.",[23,24,25,26,27,28,29,30,31,32],"Quality of Life","Ichthyosis","Palmoplantar Keratoses","Epidermolysis Bullosa","Ectodermal Dysplasia","Basal Cell Nevus Syndrome","Birt-Hogg-Dube Syndrome","Tuberous Sclerosis","Cutis Laxa","Albinism","RECRUITING","2025-05-16",{"date":36,"type":37},"2025-05-18","ACTUAL",{"date":39,"type":37},"2024-01-01",{"date":41,"type":19},"2025-12-31",{"name":43,"class":44},"Maastricht University Medical Center","OTHER",1,{"id":47,"slug":48,"hasResults":11,"nctId":49,"briefTitle":50,"officialTitle":50,"acronym":51,"eligibilityCriteria":52,"healthyVolunteers":53,"sex":16,"minAge":4,"maxAge":4,"enrollmentInfo":54,"targetDuration":56,"studyType":20,"phases":4,"briefSummary":57,"conditions":58,"keywords":62,"overallStatus":33,"whyStopped":4,"lastUpdateSubmitDate":67,"lastUpdatePostDateStruct":68,"startDateStruct":70,"completionDateStruct":72,"leadSponsor":74,"locationsCount":45},"100343310","myvhl-patient-natural-history-study-100343310","NCT03749980","MyVHL: Patient Natural History Study","MyVHL","Inclusion Criteria:\n\n* All patients with von Hippel-Lindau Disease (VHL)\n\nExclusion Criteria:\n\n\\-",true,{"count":55,"type":19},10000,"1 Year","MyVHL is a multi-patient database which helps researchers identify patterns across VHL patients. MyVHL provides you -and researchers -with more complete information about VHL, like how your lifestyle, medications, and other factors impact the disease and quality of life. These insights help you better understand the condition and help researchers know where to focus their efforts.\n\nDue to its rarity, there is less understanding of VHL and the factors that may have an impact. The data individuals provide in MyVHL helps researchers identify and uncover factors that may increase risk, inhibit or slow tumor growth, or lead to an effective cure.",[59,60,29,61],"Von Hippel-Lindau Disease","Hereditary Leiomyomatosis and Renal Cell Cancer","SDHB Gene Mutation",[63,64,65,66,51],"VHL","BHD","HLRCC","SDHB","2024-04-25",{"date":69,"type":37},"2024-04-26",{"date":71,"type":37},"2012-01",{"date":73,"type":19},"2028-12",{"name":75,"class":44},"Joshua Mann, MPH"]