[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100541475":3},{"organization":4,"armGroups":7,"interventions":34,"overallOfficials":39,"centralContacts":43,"locations":49,"responsibleParty":66,"collaborators":10,"id":68,"slug":69,"hasResults":70,"nctId":71,"briefTitle":72,"officialTitle":73,"acronym":10,"eligibilityCriteria":74,"healthyVolunteers":70,"sex":75,"minAge":10,"maxAge":10,"enrollmentInfo":76,"targetDuration":10,"studyType":79,"phases":10,"briefSummary":80,"conditions":81,"keywords":10,"overallStatus":51,"whyStopped":10,"lastUpdateSubmitDate":92,"lastUpdatePostDateStruct":93,"startDateStruct":96,"completionDateStruct":98,"leadSponsor":100,"locationsCount":101},{"fullName":5,"class":6},"Maastricht University Medical Center","OTHER",[8,14,18,22,26,30],{"label":9,"type":10,"description":11,"interventionNames":12},"Keratinisation disorders",null,"Keratinisation disorders comprise a heterogeneous group characterised by abnormal epidermal differentiation, such as variants of ichthyosis and palmoplantar keratoderma.",[13],"Other: Qualitative interview",{"label":15,"type":10,"description":16,"interventionNames":17},"Skin fragility disorders","Skin fragility disorders comprise a group of inherited blistering diseases, such as variants of epidermolysis bullosa.",[13],{"label":19,"type":10,"description":20,"interventionNames":21},"Ectodermal dysplasias","Ectodermal dysplasias consists of multiple inherited disorders that are characterised by abnormalities of the embryonic ectoderm, such as hair, nails, sweat glands or teeth.",[13],{"label":23,"type":10,"description":24,"interventionNames":25},"Dermato-oncogenetic syndromes","This group are genodermatoses associated with the development of malignancies ((non-)cutaneous), such as basal cell nevus syndrome (BCNS), Birt-Hoog-Dubé syndrome, tuberous sclerosis, etc.",[13],{"label":27,"type":10,"description":28,"interventionNames":29},"Other genodermatoses","In this group genodermatoses are listed that do not fit the other groups as mentioned above, for example albinism and cutis laxa.",[13],{"label":31,"type":10,"description":32,"interventionNames":33},"Health care professionals","This group includes clinical geneticists, dermatologists and other clinicians involved in the care of patients with genodermatoses.",[13],[35],{"type":6,"name":36,"description":37,"armGroupLabels":38,"otherNames":10},"Qualitative interview","Gaining insight into the perspectives of patients with genodermatoses and their partners, and health care professionals concerning reproductive decision-making and counselling.",[23,19,31,9,27,15],[40],{"name":41,"affiliation":5,"role":42},"Antoni Gostynski, MD, PhD","PRINCIPAL_INVESTIGATOR",[44],{"name":45,"role":46,"phone":47,"phoneExt":10,"email":48},"Fauve C van Veen, MD","CONTACT","+31433877293","genodermatose@mumc.nl",[50],{"facility":5,"status":51,"city":52,"state":53,"zip":54,"country":55,"countryCode":56,"cosmosGeoPoint":57,"geoPoint":62,"contacts":63},"RECRUITING","Maastricht","Limburg","6202 AZ","Netherlands","NL",{"type":58,"coordinates":59},"Point",[60,61],5.68889,50.84833,{"lat":61,"lon":60},[64],{"name":65,"role":46,"phone":47,"phoneExt":10,"email":48},"Fauve C van Veen",{"type":67,"investigatorFullName":10,"investigatorTitle":10,"investigatorAffiliation":10,"oldNameTitle":10,"oldOrganization":10},"SPONSOR","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":77,"type":78},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.",[82,83,84,85,86,87,88,89,90,91],"Quality of Life","Ichthyosis","Palmoplantar Keratoses","Epidermolysis Bullosa","Ectodermal Dysplasia","Basal Cell Nevus Syndrome","Birt-Hogg-Dube Syndrome","Tuberous Sclerosis","Cutis Laxa","Albinism","2025-05-16",{"date":94,"type":95},"2025-05-18","ACTUAL",{"date":97,"type":95},"2024-01-01",{"date":99,"type":78},"2025-12-31",{"name":5,"class":6},1]