Not_yet_recruitingNCT06656247

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

Sponsor: Istituto Ortopedico Rizzoli

Trial Details

Condition	Rare Disorders
Intervention	Online consenting
Status	Not_yet_recruiting
Participants	50
Est. Completion	1 Feb 2027
Last Updated	22 Apr 2026

Primary Outcome

Test the usability of dynamic consent in a cohort of rare patients

Eligibility Criteria

Inclusion Criteria

Inclusion Criteria: * 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) Exclusion Criteria: * All patients who do not meet the inclusion criteria will be excluded from the study

View Registry Entry

Related Analysis

Digital Consent Innovation Trial: Testing Dynamic Consent Platform for Rare Disease Research Participation

Italian researchers are testing an innovative digital platform that allows rare disease patients to maintain ongoing control over their research participation through dynamic consent technology. The study could transform how patients engage with clinical research.

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