Privacy Policy – REACH-MS

Last updated: 19 August 2025

The REACH-MS program (Regional Education Access and Collaborative Healthcare for people with Multiple Sclerosis) is committed to protecting the privacy of all participants. This policy outlines how we collect, use, store, and protect your personal information in accordance with Australian privacy laws and ethical guidelines for human research.

1. Who We Are

The REACH-MS project is coordinated by Central West Neurology and Neurosurgery, Orange NSW, with support from partner health sites in NSW, Victoria and Queensland. The project is funded by Central West Neurology and Neurosurgery, Novartis Pharmaceuticals Australia, and Roche Products Pty Ltd.

The study has been approved by the Townsville University Hospital Human Research Ethics Committee (HREC).

2. Information We Collect

If you choose to participate in REACH-MS, we will collect the following information:

  • Personal details: Name, age, postcode, contact details (email address). Diagnosis of multiple sclerosis and responses to surveys.

  • Survey data: Responses to the Health Literacy Questionnaire (HLQ) before and after the program, and any optional feedback you provide.

  • Engagement records: Interaction with newsletters, webinars, and optional face-to-face meetings.

3. How We Collect Information

Information is collected when you:

  • Sign up through the online consent form,

  • Complete surveys via this Website,

  • Provide your email for newsletters/webinars (via MailChimp), or

  • Contact the research team directly.

All data collection is voluntary. You may withdraw at any time.

4. How We Use Your Information

Your information will be used only for research purposes, specifically to:

  • Provide you with newsletters and webinar access,

  • Track changes in health literacy and knowledge,

  • Analyse the impact of the program on people with multiple sclerosis in regional areas, and

  • Report results in a non-identifiable, aggregated format for research, presentations, and publications.

You will not be personally identified in any publications or reports.

5. Data Storage and Security

We take strict measures to keep your data safe:

  • Survey data is collected and stored securely in this website (servers located in Australia).

  • Email addresses are stored securely in MailChimp, used only for program communications.

  • Access to identifiable data is restricted to authorised study staff, protected by individual logins and passwords.

  • Security audits of database access are conducted every 3 months.

  • Data will be de-identified after analysis and stored for 5 years in line with Australian data retention laws, then securely destroyed.

6. Risks of Participation

The primary risks are:

  • Inconvenience: Completing surveys and receiving digital materials.

  • Data security: While the risk of data breach is low, strict safeguards are in place.

No physical, psychological, or medical risks are anticipated.

7. Sharing of Information

We will not share your identifiable data with third parties except:

  • With your permission, or

  • Where required by law.

De-identified results may be shared with research partners, conference audiences, and peer-reviewed journals.

8. Your Rights

As a participant, you have the right to:

  • Access the information we hold about you,

  • Request corrections to your personal information,

  • Withdraw from the study at any time (using the withdrawal form on our website),

  • Request that your data not be included in final analysis if you withdraw.

Withdrawing will not affect your medical care or relationship with your neurologist.

9. Contact Us

For questions about the study or your data:
Study Coordinator:
Karina Dodd
Central West Neurology and Neurosurgery
Email: karinad@cwnn.com.au

10. Updates to This Policy

We may update this Privacy Policy to reflect changes in research requirements, legal obligations, or program improvements. Updated versions will be published on this website with the date of revision.