[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100566520":3},{"organization":4,"armGroups":7,"interventions":8,"overallOfficials":7,"centralContacts":12,"locations":7,"responsibleParty":18,"collaborators":22,"id":25,"slug":26,"hasResults":27,"nctId":28,"briefTitle":29,"officialTitle":30,"acronym":31,"eligibilityCriteria":32,"healthyVolunteers":27,"sex":33,"minAge":7,"maxAge":34,"enrollmentInfo":35,"targetDuration":7,"studyType":38,"phases":7,"briefSummary":39,"conditions":40,"keywords":42,"overallStatus":48,"whyStopped":7,"lastUpdateSubmitDate":49,"lastUpdatePostDateStruct":50,"startDateStruct":53,"completionDateStruct":55,"leadSponsor":57,"locationsCount":7},{"fullName":5,"class":6},"Istituto Ortopedico Rizzoli","OTHER",null,[9],{"type":6,"name":10,"description":11,"armGroupLabels":7,"otherNames":7},"Online consenting","The design and establishment of an innovative digital tool (a software application) to implement the dynamic consent and allowing interaction among healthcare professionals and patients",[13],{"name":14,"role":15,"phone":16,"phoneExt":7,"email":17},"Luca Sangiorgi, MD, PhD","CONTACT","(+39)051-6366342","luca.sangiorgi@ior.it",{"type":19,"investigatorFullName":20,"investigatorTitle":21,"investigatorAffiliation":5,"oldNameTitle":7,"oldOrganization":7},"PRINCIPAL_INVESTIGATOR","Luca Sangiorgi","Director of Rare Skeletal Diseases Department",[23],{"name":24,"class":6},"Azienda Ospedaliera Ospedali Riuniti Villa Sofia Cervello","100566520","implementing-dynamic-consent-for-rare-disease-patients-100566520",false,"NCT06656247","Implementing Dynamic Consent for Rare Disease Patients","Biobanks, Registries and National Health Records: Modelling a Networking Strategy to Foster Research and Development and to Support the Secondary Use of Data and Samples of Rare Disease Patients: Implementing Dynamic Consent for Rare Disease Patients","ConsDinamico","Inclusion Criteria:\n\n* Patients affected by a rare disease (based on clinical or genetic findings)\n* Patients with a suspect of rare disease (based on clinical or genetic findings)\n\nExclusion Criteria:\n\n* All patients who do not meet the inclusion criteria will be excluded from the study","ALL","100 Years",{"count":36,"type":37},50,"ESTIMATED","OBSERVATIONAL","The study aims to test on a cohort of rare patients a digital innovative tool to support patients\u002Fparents in the informed consent and assent process and to keep up-to-date a lawful informed and dynamic consent and to use samples and data for research purposes. This will favour their engagement in clinical studies, a step which is well known to be very demanding, particularly in the rare diseases scenario, and stimulate a bidirectional dialogue between researchers and patients\u002Fparents\u002Flegal representatives.",[41],"Rare Disorders",[43,44,45,46,47],"Dynamic Consent","Rare Diseases","Digital Tool","Informed Consent","Patient Engagement","NOT_YET_RECRUITING","2026-04-21",{"date":51,"type":52},"2026-04-22","ACTUAL",{"date":54,"type":37},"2026-06",{"date":56,"type":37},"2027-02",{"name":5,"class":6}]