Implementing Dynamic Consent for Rare Disease Patients
ConditionRare Disorders
Trial statusNot yet recruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeUp to 100
SponsorIstituto Ortopedico Rizzoli
About this trial
The study aims to test on a cohort of rare patients a digital innovative tool to support patients/parents 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/parents/legal representatives.
Eligibility criteria
Qualifiers
Patients affected by a rare disease (based on clinical or genetic findings)
Patients with a suspect of rare disease (based on clinical or genetic findings)
Disqualifiers
All patients who do not meet the inclusion criteria will be excluded from the study
Trial design
Treatments tested in this trial
- Online consenting
Treatment groups
No treatment groups listed
Locations
Sponsors and collaborators
Istituto Ortopedico Rizzoli
Lead sponsor
Azienda Ospedaliera Ospedali Riuniti Villa Sofia Cervello
Collaborator
Source ClinicalTrials.gov