Information collected: your name and contact details, the patient's relationship to you, age, diagnosis, genetic mutation, ambulatory/functional status, current treatments, prior trial participation, and any other health information you choose to provide in your message or intake.
Who may receive it: DMD Pathways staff, the clinical trial sponsor, the principal investigator and study coordinators at your preferred study site, and their authorised contract research organisations.
Purposes: to assess possible eligibility for the trial, to contact you about next steps, and to keep a record of this authorization.
How long we keep it: for as long as necessary for the purposes above and to meet our legal and regulatory record-keeping obligations (typically up to the trial sponsor's retention period). You can request earlier deletion at any time, subject to those obligations.
International transfers: information may be transferred to sponsors, sites, or service providers in the U.S., UK, EU, Canada, or other countries. Where required, we rely on appropriate safeguards (such as Standard Contractual Clauses, the UK IDTA, or PIPEDA-equivalent protections).
Lawful basis (UK/EU): your explicit consent (Art. 6(1)(a) and Art. 9(2)(a) UK GDPR) for processing of special category health data.
