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Implementing Dynamic Consent for Rare Disease Patients

NCT06656247 · Status: NOT_YET_RECRUITING · Type: OBSERVATIONAL · Enrollment: 50

Last updated 2026-04-22

No results posted yet for this study

Summary

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.

Conditions

Interventions

OTHER

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

Sponsors & Collaborators

  • Azienda Ospedaliera Ospedali Riuniti Villa Sofia Cervello

    collaborator OTHER

  • Istituto Ortopedico Rizzoli

    lead OTHER

Eligibility

Max Age
100 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2026-06-30
Primary Completion
2027-02-28
Completion
2027-02-28

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Entities

Diseases

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT06656247 on ClinicalTrials.gov