Participation & Consent

1. Purpose of the Registry

The Charcot-Marie-Tooth Foundation of India (CMTFOI) maintains a patient registry to collect structured, comparable information about people affected by Charcot-Marie-Tooth disease (CMT) worldwide.

The Registry helps CMTFOI and the broader CMT community understand how CMT affects people across different populations and countries, support patient advocacy and improve access to reliable information and care.

The Registry may also support appropriately governed research and scientific collaboration, including research conducted with approved organisations in India or other countries.

2. What Information May Be Collected

Registry information may include demographic and contact details, symptoms and clinical history, family history, functional information, diagnosis, treatment and management information, and genetic or diagnostic findings that you choose to share.

Information may also include responses from relevant CMT Veda assessments and documents or reports that you choose to upload.

If you already have a CMTFOI record, information from that record may be linked to your account and shown to you before it is used, with its source clearly labelled. You can review and correct your Registry information.

3. How Information May Be Used

Registry information may be used by CMTFOI for Registry management and maintaining data quality; patient advocacy and improving access to CMT information and care; understanding CMT across different populations and regions; and appropriately governed CMT research and scientific activities.

Research may include studies relating to CMT's natural history, genetics, diagnosis, functional outcomes, treatment and management.

Research or data-sharing may involve appropriately approved academic, clinical, non-profit or commercial organisations in India or other countries, subject to applicable law and appropriate ethical and governance requirements.

This consent does not mean that you are consenting to a specific clinical trial or research study. A specific study may require separate information and consent.

4. Privacy & Confidentiality

Your Registry information, assessments and uploaded reports are intended to remain private to your account and will be protected using appropriate technical and organisational safeguards.

Access within CMTFOI will be limited to authorised persons who need it for legitimate Registry, governance, support, security or research-management purposes.

Where information is shared for approved research or other external purposes, it will be anonymised, de-identified or pseudonymised wherever reasonably possible, with appropriate safeguards. Approved collaborators may be located in India or other countries.

CMT Veda does not make a diagnosis and does not replace care from your qualified healthcare team.

5. Voluntary Participation

Taking part in the CMTFOI Patient Registry is voluntary and separate from using CMT Veda AI.

You can continue to use screening, the functional profile, Ask Veda, educational information and other independent features of CMT Veda without joining the Registry.

Your decision to participate or not participate in the Registry will not affect your access to these features or your medical care.

6. Updating Your Information & Your Rights

You can review your Registry information and request correction of information that is inaccurate or incomplete.

Depending on the laws applicable to you, you may also have rights to access information about the processing of your data, request deletion or anonymisation where applicable, withdraw consent, and raise privacy or Registry-related complaints.

Because the Registry is intended for participants worldwide, the specific rights available to you may depend on the laws applicable in your country.

For questions or privacy requests, contact the CMTFOI Privacy & Data Protection Contact — Email: privacy@cmtfoi.org; Website: https://cmtfoi.org.

7. Withdrawing Consent

You can withdraw your Registry consent at any time through Registry Settings in CMT Veda or by contacting CMTFOI.

After withdrawal, CMTFOI will stop processing your Registry information on the basis of your consent within a reasonable period, unless continued processing is required or permitted by applicable law.

Subject to applicable law, identifiable Registry information will be deleted or anonymised within a reasonable period. Information that has already been irreversibly anonymised may not be identifiable or removable.

Limited information may be retained where required or permitted by law, including for legal, security, audit or compliance purposes. Withdrawal does not affect the lawfulness of processing carried out before your withdrawal.

8. Questions, Complaints & Data Retention

CMTFOI will retain identifiable Registry information only for as long as reasonably necessary for the purposes described above and in accordance with its applicable data-retention policy and law. When information is no longer required, it will be securely deleted or anonymised.

For any question about the Registry, this consent, your information, withdrawal of consent, privacy or complaints, contact the Charcot-Marie-Tooth Foundation of India (CMTFOI), Privacy & Data Protection Contact — Email: privacy@cmtfoi.org; Website: https://cmtfoi.org.