Oligodontia, Ectodermal dysplasia, Severe tooth agenesis, Hypohidrotic ectodermal dysplasia Congenital conditions in which many teeth are missing and/or the development of teeth, hair, skin and sweat glands is affected.
Conditions
Interventions
No medicinal product, medical device, or treatment is being investigated. The study focuses on collecting the opinions and experiences of experts and patient representatives in order to develop shared
Sponsors
Erasmus MC, Universitair Medisch Centrum Rotterdam
Eligibility
Age
18 Years to 99 Years
Inclusion criteria
Inclusion criteria: Healthcare professionals or researchers with demonstrated expertise in oligodontia and/or ectodermal dysplasia.Representatives of patient organisations with demonstrated involvement in advocacy, support, or care-related activities for individuals with oligodontia and/or ectodermal dysplasia.Affiliated with an expert centre, university hospital, specialised treatment centre, research institution, or recognised patient organisation.Healthcare professionals and researchers: at least 5 years of relevant experience.Patient representatives: active involvement in a recognised patient organisation related to oligodontia and/or ectodermal dysplasia.Willingness to participate in multiple Delphi rounds.Proficiency in English.
Exclusion criteria
Exclusion criteria: Insufficient expertise in oligodontia and/or ectodermal dysplasia.No active involvement in the clinical care, research, or patient advocacy related to oligodontia and/or ectodermal dysplasia.Not affiliated with an expert centre, university hospital, specialised treatment centre, research institution, or recognised patient organisation.Inability to understand or complete the questionnaires in English.Declining or withdrawing consent to participate in the study.Failure to complete the first Delphi round.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| The primary outcome of the study is a European consensus on recommendations for the diagnosis, treatment, and long-term management of individuals with oligodontia and ectodermal dysplasia. These recommendations may be used to improve the quality, consistency, and coordination of care across Europe. | — |
Secondary
| Measure | Time frame |
|---|---|
| Secondary outcomes include the degree of consensus achieved for individual recommendations, identification of variations in current clinical practice across Europe, prioritisation of key aspects of care, and the development of harmonised recommendations and care pathways for individuals with oligodontia and ectodermal dysplasia. | — |
Countries
Australia, Belgium, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Luxembourg, Malta, Netherlands, Norway, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, Switzerland
Contacts
Public ContactP.L. Carvajal Monroy
Erasmus MC, Universitair Medisch Centrum Rotterdam
Outcome results
None listed