Implementing Dynamic Consent for Rare Disease Patients

Starting soon

Conditions studied: Rare Disorders

In brief

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.

Key facts

Study ID

NCT06656247

Run by

Istituto Ortopedico Rizzoli

People needed

50

Starts

2026-06-01

Expected to finish

2027-02-01

Last updated by the study team

2026-04-22

Who can join

Age: any, up to 100. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• 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)

You may not qualify if…

• All patients who do not meet the inclusion criteria will be excluded from the study

Full record on ClinicalTrials.gov

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