Legal
Privacy Notice
How we collect, use, share, and protect your personal information.
Introduction
DMD Pathways respects your privacy and is committed to protecting your personal information. This Privacy Notice explains how we collect, use, disclose, and safeguard your data when you use our platform, including when you submit inquiries about clinical trials, treatments, or support services.
This notice is designed to comply with applicable laws, including the UK General Data Protection Regulation (UK GDPR) and Data Protection Act 2018, Canada's Personal Information Protection and Electronic Documents Act (PIPEDA), and the U.S. Health Insurance Portability and Accountability Act (HIPAA) where applicable.
Who we are
DMD Pathways is a rare disease navigation platform connecting families affected by Duchenne muscular dystrophy with clinical trials, treatments, and support resources. We are the data controller for personal information collected through this platform.
If you have questions about this notice or your data, contact us at privacy@dmd-pathways.com.
What information we collect
We may collect the following categories of personal information:
- Contact details: name, email address, phone number, preferred time to be contacted.
- Relationship information: your relationship to the patient (e.g., parent, legal guardian, clinician).
- Health information: patient age, diagnosis, genetic mutation, ambulatory or functional status, current and prior treatments, and trial participation history.
- Preferences: preferred study site, trial interests, and marketing communication preferences.
- Technical data: IP address, browser type, device information, and usage data (collected via cookies and similar technologies).
These categories describe information a visitor intentionally submits through a contact or information-request form. Answers entered into the Treatment Matching and Clinical Trial Matching questionnaires are handled differently and are not saved — see How DMD Pathways uses information from matching tools.
How we use your information
We use your personal information for the following purposes:
- To assess possible eligibility for clinical trials and connect you with trial sponsors and study sites.
- To respond to your inquiries and provide the services you request.
- To send you information about relevant trials, treatments, and resources.
- To maintain records of consent and authorization for legal and regulatory compliance.
- To improve our platform, services, and user experience.
- To comply with legal obligations and protect our rights.
How DMD Pathways uses information from matching tools
Treatment and Clinical Trial Matching
Information entered into the DMD Pathways Treatment Matching and Clinical Trial Matching questionnaires is used only to generate the current set of educational results.
Questionnaire answers are not saved to a DMD Pathways account, patient record, database, browser storage, or ongoing matching profile. They are not placed in page URLs or used to create a history of a visitor's treatment or clinical trial searches.
The answers remain available only during the active matching session so that the visitor can move between the questionnaire, results, and relevant detail pages. The answers are cleared when the visitor leaves the matching flow, refreshes the page, restarts the matching process, or begins a new browser session.
For Clinical Trial Matching, the minimum answers needed to generate results are sent securely to a DMD Pathways-operated matching function for immediate processing. They are not intentionally logged, saved, added to a database, or sent to ClinicalTrials.gov. ClinicalTrials.gov receives disease-related search terms only.
DMD Pathways does not use matching questionnaire answers to create a medical record, determine treatment suitability, confirm clinical trial eligibility, or provide medical advice.
Contact and information requests
Information intentionally submitted through a contact form or request-for-information form is separate from the Treatment Matching and Clinical Trial Matching questionnaires.
DMD Pathways retains the information a visitor directly enters into the contact form so that we can respond to the request and manage appropriate follow-up. This may include the visitor's name, contact information, relationship to the individual with Duchenne, message, communication preferences, and required acknowledgment selections.
When a visitor requests information about a particular clinical trial, the trial title and NCT number may also be retained with the request. This trial reference is displayed to the visitor before the form is submitted.
Matching questionnaire answers are not automatically copied into or attached to a contact submission.
Contact submissions are retained for up to 24 months from the submission date and are then deleted or irreversibly anonymized through an automated retention process, unless continued retention is required by law.
Visitors should avoid including unnecessary medical, genetic, or other sensitive information in an open-text message. Information voluntarily entered into the message field will be retained as part of the contact request.
Optional trial feedback
Visitors may choose to provide optional feedback about why a clinical trial did not appear relevant or why they decided not to request more information.
This feedback is collected without a visitor identifier, user account, intake record, or matching questionnaire answers. Optional free-text feedback should not include names, contact information, or other identifying details.
Anonymous trial feedback is retained for up to 12 months and is then deleted through an automated retention process.
Country preference
DMD Pathways may store a visitor's selected country in the browser so that the website can display the appropriate country-specific content and resources.
The country preference does not contain treatment answers, clinical information, genetic information, or clinical trial matching answers. Visitors can change their selected country through the website's country selector.
Your choices and privacy requests
You may contact DMD Pathways to ask about personal information you intentionally submitted through a contact or information-request form, or to request access, correction, or deletion where applicable.
Because Treatment Matching and Clinical Trial Matching questionnaire answers are not saved, DMD Pathways cannot retrieve or reproduce those answers after the active matching session has ended.
Privacy rights and response timelines may vary depending on the visitor's country or region.
To make a privacy request, email privacy@dmd-pathways.com.
Lawful basis for processing
Under UK GDPR and PIPEDA, we rely on the following lawful bases to process your personal information:
- Consent: for processing special category health data (Art. 9 UK GDPR) and for sharing your information with trial sponsors and study sites.
- Contract: where processing is necessary to provide the services you have requested.
- Legal obligation: to comply with applicable laws and regulatory requirements.
- Legitimate interests: for platform improvement, security, and fraud prevention, provided these do not override your rights.
Who we share your information with
We may share your personal and health information with the following recipients, but only with your explicit consent:
- Clinical trial sponsors and their authorised representatives, to assess eligibility and contact you about next steps.
- Study sites and investigators at your preferred or selected location.
- Contract research organisations (CROs) working on behalf of sponsors.
- Service providers who help us operate our platform (e.g., cloud hosting, email delivery), under strict data processing agreements.
- Regulatory and legal authorities where required by law.
Once information is disclosed to a sponsor or site, it may no longer be protected by HIPAA and may be re-disclosed by the recipient. It will remain subject to UK GDPR/DPA 2018 and PIPEDA where applicable.
International transfers
Your information may be transferred to, stored, or processed in countries outside the UK, EU, and Canada, including the United States, where trial sponsors and sites may be based. Where required, we use appropriate safeguards such as Standard Contractual Clauses (SCCs), the UK International Data Transfer Agreement (IDTA), or PIPEDA-equivalent protections to ensure your data remains protected.
How long we keep your information
Treatment Matching and Clinical Trial Matching questionnaire answers are not saved or retained. Contact submissions are retained for up to 24 months from the submission date and are then deleted or irreversibly anonymized through an automated retention process, unless continued retention is required by law. Anonymous trial feedback is retained for up to 12 months and is then deleted through an automated retention process. You may request earlier deletion of information you intentionally submitted, subject to legal and regulatory obligations.
Your data protection rights
Depending on your location, you may have the following rights regarding your personal information:
- Access: request a copy of the personal information we hold about you.
- Rectification: request correction of inaccurate or incomplete information.
- Erasure: request deletion of your personal information ("right to be forgotten"), subject to legal obligations.
- Restriction: request restriction of processing in certain circumstances.
- Portability: request transfer of your data to another controller.
- Objection: object to processing based on legitimate interests or for direct marketing.
- Withdraw consent: withdraw your consent at any time without affecting the lawfulness of processing before withdrawal.
To exercise any of these rights, contact us at privacy@dmd-pathways.com.
Complaints
If you are concerned about how we handle your personal information, you have the right to lodge a complaint with:
- The UK Information Commissioner's Office (ICO)
- The Office of the Privacy Commissioner of Canada (OPC)
- The U.S. Department of Health and Human Services (HHS) for HIPAA-related concerns
Cookies and tracking
We use cookies and similar technologies to improve your experience, analyse platform usage, and deliver relevant content. You can manage your cookie preferences through your browser settings. Essential cookies that enable core platform functionality cannot be disabled.
Changes to this notice
We may update this Privacy Notice from time to time to reflect changes in our practices, legal requirements, or platform features. We will post the updated notice on this page with a revised effective date. Material changes will be communicated to you directly where required by law.
Contact us
If you have any questions, concerns, or requests regarding this Privacy Notice or our handling of your personal information, please contact us at:
Email: privacy@dmd-pathways.com
Last updated: 6 August 2026
By using the DMD Pathways platform and submitting your information, you acknowledge that you have read and understood this Privacy Notice.