Privacy Notice

Welcome to the Alexion Assist NF1 mobile app! We refer to this App throughout this Privacy Notice as the Alexion Assist NF1 App or the “App”. The Alexion Assist NF1 App was developed and designed by RxMx PTY with input and advice from the app sponsor Alexion, a subsidiary of Astrazeneca (“Alexion”). Alexion is the owner and manufacturer of Koselugo. Alexion promotes and markets Koselugo in Australia. We refer to Alexion as the “Sponsor”. An important feature of this app is the way in which privacy is maintained. This notice explains what happens to personal information when you use the Alexion Assist NF1 App. If you have any questions about how the App uses personal information, please contact RxMx’s Privacy Officer at privacy@rxpx.health.

1. Who makes the Alexion Assist NF1 App? 

RxMx PTY makes the Alexion Assist NF1 App and decides what personal information to collect, how the App will work, and how to support members. Alexion, a subsidiary of Astrazeneca, is the Sponsor of the App and provides input and advice to RxMx on the Alexion Assist NF1 design. We refer to Alexion as the “Sponsor”. RxMx does not share personal information from the Alexion Assist NF1 App with third parties, including the Sponsor, without the explicit consent of members. 

RxMx PTY t/a RxPx
Level 1/94 Mallett St
Camperdown NSW 2050

Tel: 02 8004 6877
Email:  info@rxpx.health

RxMx Privacy Officer
Email: privacy@rxpx.health 

2. What kind of personal information does the Alexion Assist NF1 App collect?

Required:

Account information about the member – user name, email address

Basic information about the child (“patient”) - gender, month and year of birth, height, weight, ethnicity, location (country, state/region)

We collect basic information about the patient because it relates to medication doses and disease progression and helps us provide services, including reminders, and relevant content.

Optional:

• Location (city)

• Medications

• Symptoms (including date of onset)

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

• Personal notes about side effects and medications

We do not collect any personal information from the QR code used to sign up. 

3. What do we do with personal information?

RxMx uses personal information when you give your consent (say it’s okay) and sign up for the Alexion Assist NF1 App. 

RxMx uses personal information to:

• create the Alexion Assist NF1 App account;

• deliver curated content in the App;

• create My Health Report;

• create anonymous data about members and patients and what members do in the Alexion Assist NF1 App;

• contact you with updates and information about the Alexion Assist NF1 App; 

• understand how you use the Alexion Assist NF1 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 Alexion Assist NF1 App.  

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

• keep track of and review health events; and

• enable you to keep track of medications.

It could be possible for RxMx to know who you are from personal information you provide when you set up your account. 

If you are participating in a Sponsor’s patient community and have been referred to the Alexion Assist NF1 App, the Sponsor will not have access to or receive any personal information from the Alexion Assist NF1 App.

RxMx uses information about you and the patient and what you do in the Alexion Assist NF1 App to create data that does not identify individuals or link individuals to personal information. This anonymous data is used to understand the needs of the Alexion Assist NF1 App community and RxMx shares it with the Sponsor. 

RxMx does not sell, rent, or share personal information collected in the Alexion Assist NF1 App. 

RxMx may make personal information known to third parties if:

• The law says RxMx has to reveal it;     

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

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

4. Who can see personal information? 

Only certain RxMx employees will be able to see personal information in the Alexion Assist NF1 App: 

• RxMx Support staff if you contact support; and 

• Other RxMx staff if their work on the Alexion Assist NF1 App requires them to see it. 

RxMx uses other third parties to help deliver the Alexion Assist NF1 App to you. These third parties may be able to see personal information. They are only allowed to use personal information to deliver the Alexion Assist NF1 App.

The Alexion Assist NF1 App pulls information from trackers to create My Health Report. You can review the 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 to provide a name, which is kept locally on your device and not sent to RxMx’s database.

• The name will be added to the pdf.

• You can choose to print and share the report using email or sms.

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. 

De-identified patient details may be collected in case AEs are reported through the program. 

6. How long do we keep personal information? 

RxMx will keep personal information while you are using the Alexion Assist NF1 App. If you don’t use the Alexion Assist NF1 App for one (1) year, RxMx will remove the account and any associated personal information from the Alexion Assist NF1 App.

You can also go into settings to cancel your account and ask RxMx to remove personal information from your Alexion Assist NF1 App account. RxMx removes personal information by erasing it from the active database. It will take 60 days for RxMx to do this. 

RxMx regularly makes copies of the Alexion Assist NF1 App for safe keeping. RxMx keeps these copies in a safe place for five (5) years. It will take five (5) years from the time personal information is removed from the Alexion Assist NF1 App for RxMx to remove personal information from the copies. 

7. How do we protect personal information?

RxMx is subject to Australian privacy laws, and other privacy and data protection laws where they apply. 

We use technical and organizational ways to protect personal information.

RxMx:

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

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

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

• Makes companies helping to deliver the Alexion Assist NF1 App promise to protect personal information. They may use personal information only under RxMx’s instructions to deliver the Alexion Assist NF1 App.
  

8. What rights do you have to personal information? 

You have the right to access personal information you have provided in the Alexion Assist NF1 App. You can see and edit personal information by opening the settings tab in the App. 

You can withdraw your consent for RxMx to keep using personal information you have provided. You do this by canceling your account on the settings tab in the App.

You can ask RxMx to correct personal information.

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

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

Yes, RxMx’s computers use a set of rules to automatically deliver curated content that matches the personal information you have provided when you set up your Alexion Assist NF1 App account. 

10. Is the Alexion Assist NF1 App for children? 

The Alexion Assist NF1 App is not meant to be used by children but it does collect personal information about individuals who are under eighteen (18) years old from parents or guardians who use the App. The Privacy Act 1988 protects individual’s personal information regardless of their age. 

11. Where is your personal information kept? 

Alexion Assist NF1 App personal information may be accessible by service providers (e.g., processors routing information) that may be located outside of Australia, including in the United States. However, personal information on the Alexion Assist NF1 App will be stored on servers in Australia.

RxMx employees who can see personal information are in Australia. 

12. Where can you go to complain about how the Alexion Assist NF1 App deals with personal information? 

You can tell RxMx’s Privacy Officer at privacy@rxpx.health if you are worried about the Alexion Assist NF1 App and personal information. 

If telling RxMx’s Privacy Officer doesn’t help, you can contact the Office of the Australian Information Commissioner:

https://www.oaic.gov.au/privacy/privacy-complaints/lodge-a-privacy-complaint-with-us 

Koselugo® is a registered trademark of AstraZeneca AB, and is used by Alexion Pharmaceuticals Australasia Pty Limited under licence. Koselugo is sponsored and distributed by Alexion Pharmaceuticals Australasia Pty Limited.

© 2024. All rights reserved. Alexion Pharmaceuticals Australasia Pty Ltd. ACN 132 343 036. Macquarie Park, NSW 2113 Australia. March 2024 approval code: M/AU/KOS-NF1/0014