UCB ONWARD Patient Support App

Privacy Notice

Last updated: August 6,2025

Welcome to the ONWARD Patient Support App

1. Who makes the ONWARD App?

The ONWARD Support Program (“Program”) offers support to patients prescribed ZILBRYSQ and RYSTIGGO, including access to the ONWARD Patient Support App (“ONWARD App”).

The Program is sponsored by UCB Pharmaceuticals Australia Pty Limited ABN 48 005 799 (“UCB”) and the ONWARD App is administered by RxMx Networks Inc. (“RxMx”).

If you have questions about the Program, or your prescribed medications, contact your treating specialist.

If you have questions about the App and how your personal information is processed, contact RxMx Privacy Officer.

Medical Safety Systems Corporate Pty Ltd t/a RxPx
Post: Level 1/94 Mallett St
Camperdown NSW 2050
Tel: 02 8004 6877

RxMx Privacy Officer
privacy@rxmxcorp.com

2. What kind of personal information does the ONWARD App collect?

When you sign up, the ONWARD Support Program provides the following information for your ONWARD App account.

  • Date of birth

  • Gender

  • Email address

  • Location (country, state)

  • Medication (Drug Identification Number)

Required:

Account information

  • User name

Personal health information

  • When you started the medication

Optional:

  • Pronouns – the option “prefer not to answer” is presented during sign up

  • GPS location

  • Health trackers and surveys

    • Health-related quality of life

    • Mood and well-being

    • Daily strength and activity

    • Fatigue tracker

    • Symptom comfort check

    • Personalisation survey

    • Satisfaction survey

  • Non-pharmacological (non-medical) interventions for symptom management

  • Appointment details

  • Other medical conditions, and insurance information

  • Personal notes, photos and documents, which may include personal health information

3. What do we do with your personal information?

RxMx uses your personal information when you sign up for the ONWARD App and give your consent. RxMx uses your personal information under the instructions of UCB only for the purposes of administering the ONWARD App.

RxMx uses your personal information to:

  • create your ONWARD App account;

  • group you with other members at a similar stage in the health journey;

  • match you with other members;

  • let you communicate with other members;

  • create My Health Report;

  • deliver curated content to you in the app;

  • create anonymous data about members and what members do in the ONWARD App;

  • contact you with updates and information about the ONWARD App;

  • understand how you use the ONWARD App so we can improve it;

  • help you when you need it; and

  • reply when you have questions or want to tell us something you like or don’t like about the ONWARD App.

  • If you choose to use certain features, we will use your personal information to help you:

    • keep track of and review your health events; and

    • enable you to keep track of your medications.

RxMx knows who you are from the personal information you enter. UCB knows when you create your account on the ONWARD App. RxMx does not share any additional personal information you add to your ONWARD App profile or activities in the ONWARD App with UCB or your treating specialist.

RxMx uses information about you and what you do in the ONWARD App to create data that does not identify you or link you to your personal information. This anonymous data is used to understand the needs of the ONWARD App community.

RxMx does not sell, rent, or share your personal information.

RxMx may make your personal information known to third parties if:

  • The law says RxMx has to reveal it;

  • An Adverse Event is being reported (see #5 below);

  • RxMx believes it is necessary to protect your safety, the safety of other members, or the public; or

  • RxMx has to reveal your personal information to protect and defend our rights or property.

4. Who can see your personal information?

Only certain RxMx employees will be able to see your personal information. They will see it only if they need to support you or if their work on the ONWARD App requires them to see it.

RxMx uses other third parties to help deliver the ONWARD App to you. These third parties can see your personal information. They are only allowed to use your personal information to deliver the ONWARD App.

You decide which personal information other members can see. You can go to the “settings” tab on the app and choose to show your basic information, basic health information, story and interests to other members.

When you post something to the ONWARD App, you can choose to share it with the whole community, your circle, just one or two friends, or you can keep it private.

Other members cannot see your Health Journey or your medication trackers or survey responses. One-on-one messages are kept private and not shared with anyone, including the ONWARD App sponsor UCB.

RxMx adds a Community Manager to your circle when you set up your account. Your Community Manager is there to support you. They can send private messages and can remove posts that are not allowed in the ONWARD App.

The ONWARD App pulls information from your trackers to create My Health Report. You can review your report in the app and then create a pdf:

  • by default, My Health Report is not shared with anyone;

  • to create a pdf version, you will be asked if you would like to provide your name, which would be kept locally on your device and not sent to RxMx’s database;

  • your name will be added to the pdf, if provided;

  • you can choose to print and share the report using email or SMS.

  • Neither RxMx nor the Sponsors assume liability for how you use your My Health Report (pdf) or who you share it with.

If you choose to participate in the optional Real World Evidence Study, then RxMx shares personal information collected in the ONWARD App, including your personal health information, according to the terms of consent for the ONWARD Support Program – Real World Evidence Study.

5. Adverse Events

The law requires that pharmaceutical companies report unexpected or unwanted reactions to drug products, known as “Adverse Events”, or side effects, that happen to someone using their medicine or treatments.

RxMx’s app uses automated methods (a set of rules) to identify potential Adverse Events from key words used in posts and messages in the ONWARD App. The app notifies Community Managers of potential Adverse Events so they can review the post or message.

UCB is legally required to report adverse drug events to monitor Product complaints. If a Community Manager confirms an Adverse Event, it will be reported to UCB’s Patient Safety Team. The report will only include your adverse event details, not your personal information. UCB’s Patient Safety Team may ask the community manager to contact you to obtain your consent for the collection of additional information as required to fulfill these obligations.

For more information on Adverse Events, please contact UCB Australia via phone (03) 9838 1800 (option 3) or email ucbcares@ucb.com.

6. How long do we keep your personal information?

RxMx will keep your personal information while you are using the ONWARD App. If you don’t use the ONWARD App for one (1) year, RxMx will remove your account and personal information from the ONWARD App.

You can also go into settings to cancel your account and ask RxMx to remove your personal information from the ONWARD App. RxMx removes your personal information by erasing it from the active database. It will take 60 days for RxMx to do this.

Please note that removing personal information from the ONWARD App does not remove your personal information from the ONWARD Support Program.

RxMx regularly makes copies of the ONWARD App for record keeping. RxMx keeps these copies in a safe place for five (5) years. It will take five (5) years from the time your personal information is removed from the ONWARD App for RxMx to remove personal information from the copies.

7. How do we protect your personal information?

RxMx is subject to Australian and other applicable privacy and data protection laws.

We use technical and organizational ways to protect your personal information.

RxMx:

  • Puts your personal information into code (“encrypts it”) when moving and storing it.

  • Removes your personal information if there is no need to have your personal information.

  • Makes sure that only employees who need to see your personal information to do their jobs can see your personal information.

  • Makes companies helping to deliver the ONWARD App promise to protect your personal information. They may use personal information only under RxMx’s instructions to deliver the ONWARD App.

8. What rights do you have to your personal information?

You have the right to access your personal information in the ONWARD App. You can see and edit your personal information by opening the settings tab in the app.

You can withdraw your consent for RxMx to keep using your information. You do this by canceling your account on the settings tab in the app.

You can ask RxMx to correct your personal information.

You can ask RxMx for a copy of the personal information you have provided to us.

If you have questions about your rights and how to use them, please contact RxMx’s Privacy Officer at privacy@rxmxcorp.com.

9. Are computers used to make decisions based on your personal information?

Yes, RxMx’s computers use automated methods (a set of rules) to automatically assign you to a group in the ONWARD App based on your answers to questions about how familiar you are with your disease and therapy. The group you are assigned to will include members at similar points in their health journeys so that you can support one another.

RxMx also uses automated methods (a set of rules) to look at your personal information and match you to other members of the ONWARD App that aren’t in your group. The ONWARD App then suggests these friends to you in the app. You decide if you want to invite a suggested friend into your circle.

The ONWARD App also suggests you as a friend to other members. The other members might send you an invite. You decide if you want to accept an invite into another member’s circle.

Personal information from your Health Journey, Medication Tracker, and surveys are not used for matchmaking in the app.

You decide how much personal information to give to the ONWARD App. When you provide more information, your friend suggestions will be better matches for you and more likely to accept you into their circles. Remember, you can always update your profile with more information when you are ready.

RxMx uses automated methods (a set of rules) in the ONWARD App to identify Adverse Events (see 5 above).

RxMx also uses automated methods (a set of rules) to identify profanity and inappropriate language in community posts and messages.

10. Is the ONWARD App for children?

The ONWARD App is not designed to be used by children and adolescents under the age of 18. The ONWARD App collects personal information about children where a parent, guardian, or a nominated carer has provided the child’s personal information as part of the ONWARD Support Program and then signed up to use the ONWARD App on behalf of the child or the adolescent.

11. Where is your personal information kept?

Personal information may be stored on servers located in jurisdictions outside of Australia and you consent to such export and storage. Some of those countries may not offer the same level of privacy protection as in Australia. However, RxMx enters into agreements with its third-party service providers to ensure personal information is secure and adequate data protection is provided.

RxMx employees who can see your personal information in the ONWARD App are in Australia, Canada, and the United States.

12. Where can you go to ask about how the ONWARD App deals with your personal information?

You can tell RxMx’s Privacy Officer at privacy@rxmxcorp.com if you are worried about the ONWARD App and your personal information.

If telling RxPx’s Privacy Officer doesn’t help, you can contact the Australian privacy regulator.

We may update this Privacy Notice if we change the way we handle personal information. We will post changes to this page with the date of the change. If we make meaningful changes to the handling of personal information, we will notify you in the App and/or via email.