Owner and Data Controller
FSHD Global Research
PO Box A296
Sydney South NSW 1235
Sydney NSW 2000
Owner contact email: admin@fshdglobal.org
Types of Data collected
The owner does not provide a list of Personal Data types collected.
Complete details on each type of Personal Data collected are provided in the dedicated sections of this privacy policy or by specific explanation texts displayed prior to the Data collection.
Personal Data may be freely provided by the User, or, in case of Usage Data, collected automatically when using this Application.
Unless specified otherwise, all Data requested by this Application is mandatory and failure to provide this Data may make it impossible for this Application to provide its services. In cases where this Application specifically states that some Data is not mandatory, Users are free not to communicate this Data without consequences to the availability or the functioning of the Service.
Users who are uncertain about which Personal Data is mandatory are welcome to contact the Owner.
Any use of Cookies – or of other tracking tools — by this Application or by the owners of third-party services used by this Application serves the purpose of providing the Service required by the User, in addition to any other purposes described in the present document.
Users are responsible for any third-party Personal Data obtained, published or shared through this Application.
Mode and place of processing the Data
Methods of processing
The Owner takes appropriate security measures to prevent unauthorized access, disclosure, modification, or unauthorized destruction of the Data.
The Data processing is carried out using computers and/or IT enabled tools, following organizational procedures and modes strictly related to the purposes indicated. In addition to the Owner, in some cases, the Data may be accessible to certain types of persons in charge, involved with the operation of this Application (administration, sales, marketing, legal, system administration) or external parties (such as third-party technical service providers, mail carriers, hosting providers, IT companies, communications agencies) appointed, if necessary, as Data Processors by the Owner. The updated list of these parties may be requested from the Owner at any time.
Place
The Data is processed at the Owner's operating offices and in any other places where the parties involved in the processing are located.
Depending on the User's location, data transfers may involve transferring the User's Data to a country other than their own. To find out more about the place of processing of such transferred Data, Users can check the section containing details about the processing of Personal Data.
Retention time
Unless specified otherwise in this document, Personal Data shall be processed and stored for as long as required by the purpose they have been collected for and may be retained for longer due to applicable legal obligation or based on the Users’ consent.
Further information about the processing of Personal Data
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Introduction
The Cure FSHD application (“the App, we, us or our”), being a data capture solution and clinical informatics platform, a secure, internet-based software platform, and related services (collectively, the “Services”) was developed alongside medical professionals, for medical professionals and patients. The App is compliant with the Australian Privacy Principles (“APP”) as contained within the Privacy Act 1988 (Cth) (“the Act”) when collecting, using, disclosing and managing your personal information.
We understand the importance of the doctor-patient relationship and the importance of keeping your personal information private. For the purposes of this Privacy Statement, the term ‘personal information’ has the meaning given to it in the Act. For the avoidance of doubt, personal information is information that identifies you as an individual, such as your name, postal address, email address, date of birth and telephone number, and includes health information (such as information or opinions about a person’s illness, injury or disability) (“Personal Information”).
This Privacy Statement describes our practices in connection with information that we collect through your use of the App through any website or device. By using the App, you agree to the terms and conditions of this Privacy Statement.
Health information is a part of the Personal Information that we collect and will be treated in accordance with this Privacy Statement. Health information that is provided to us or that we otherwise collect is subject to the additional terms and conditions in the “Health Information” section below, the terms of which will prevail and control if they are inconsistent with or contradictory to the remaining terms and conditions of this Privacy Statement.
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PERSONAL INFORMATION
Personal Information We Collect From Providers
If you are a doctor or other healthcare or medical provider (“Provider”), or an individual who is authorised by a Provider to access and use the Services (“Designee”), we collect Personal Information about you when the Provider subscribes to the Services as well as when you register to use the Services. The Personal Information about Providers and Designees that we collect includes, without limitation, the Provider’s and Designee’s name, specialty, email address, phone number, and business postal address.
Personal Information We Collect From Patients and Authorised Carers
If you are a patient of a Provider who has subscribed to the Services (“Patient”), we collect Personal Information about you when you register to use the Services and through you or your caregiver’s or legal guardian’s (“Authorised Carer”) use of the Services.
If you are an Authorised Carer, we collect Personal Information about you, including, without limitation, your name, email address, phone number and your relationship to the Patient. When communicating with the Provider in using the Services, the Patient, Authorised Carer, Provider and its Designees may disclose Personal Information about the Patient, which may include health information. We do not collect health information about an Authorised Carer.
How We Use Personal Information
We may use Personal Information, as follows:
to enable you to access and use the Services.
- to respond to your inquiries, to send you important information regarding the Services, and changes to our terms and conditions, policies and/or other administrative information.
- for our business purposes, such as data analysis, audits, developing new products, and enhancing and improving our site and the Services.
as we believe to be necessary or appropriate:
(a) under applicable law, including laws outside your state or country of residence;
(b) to comply with legal process;
(c) to respond to requests from public and government authorities including public and government authorities outside your state or country of residence; or
(d) to enforce our terms and conditions.
How We Disclose Personal Information
We may disclose Personal Information, including health information as follows:
if you are a Patient, to your Provider, its Designees and Authorised Carer, without further authorisation for purposes of treatment, payment or operations; for other uses or disclosures permitted by law; or for purposes related to such uses or disclosures.
- if you are an Authorised Carer, to the Patient and his/her Provider and that Provider’s Designees.
- to our third-party service providers who provide services such as website hosting, data analysis, payment processing, order fulfillment, infrastructure provision, IT services, customer service, email delivery services, credit card processing, backup, auditing services and other similar services.
- as we believe to be necessary or appropriate:
(a) under applicable law, including laws outside your state or country of residence;
(b) to comply with legal process;
(c) to respond to requests from public and government authorities including public and government authorities outside your state or country of residence; or
(d) to enforce our terms and conditions.
SMS (Short Message Service) / Text Message Terms and Conditions
By providing your contact information, you provide clear and expressed consent to receive information via SMS/text message. Consent is not a requirement for purchasing the goods or services. You may opt-out by contacting us at any time. Messages are recurring. Message frequency varies.
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HOW WE USE AND/OR DISCLOSE HEALTH INFORMATION
We may use and/or disclose health information in the same manner as Personal Information, described above, except our use and disclosure of health information is further limited by law.
All uses or disclosures of health information shall require Patient authorisation or a valid authorisation on the Patient’s behalf, except: (1) uses or disclosures by or to the Patient; (2) uses or disclosures for treatment, payment or healthcare operations; (3) as part of any valid use or disclosure; or (4) in compliance with and pursuant to applicable law.
We may disclose health information for most other purposes only pursuant to the Patient’s valid authorisation, as follows: (1) for most uses and disclosures of psychotherapy notes; (2) for use or disclosure of health information for marketing purposes; (3) for disclosures that constitute a sale of health information; or (4) for other uses or disclosures that are not exempt from the authorisation requirement.
We may also use health information for our proper management and administration or to carry out our legal responsibilities.
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NON-PERSONAL INFORMATION
Non-Personal Information We Collect
“Non-Personal Information” is any information that does not reveal your identity, and cannot be combined with other data to identify you, such as:
Browser information
Information collected through cookies, pixel tags and other technologies
Demographic information and other information provided by you
Aggregated information
We and our third-party service providers may collect Non-Personal Information in a variety of ways, including:
Through your browser: certain information is collected by most browsers, such as your media access control address, computer type (Windows or Macintosh), screen resolution, operating system version and internet browser type and version.
Using cookies: cookies allow a web server to transfer data to a computer for record keeping and other purposes. We use cookies and other technologies to, among other things, better serve you with more tailored information and facilitate your ongoing access to and use of the Services. We use two types of cookies, “session” cookies and “persistent” cookies. A session cookie is temporary and expires after you end a session and close your web browser. We use session cookies to help customise your experience as you use the Services and maintain your signed-on status as you navigate through the features of the Services. Persistent cookies remain on your hard drive after you have exited from our Services, until you erase them, or they expire. If you do not want information collected through the use of cookies, there is a simple procedure in most browsers that allows you to decline the use of cookies. To learn more about cookies, please visit http://www.allaboutcookies.org/.
Using pixel tags, web beacons, clear GIFs or other similar technologies: these may be used in connection with some site pages and HTML-formatted email messages to, among other things, track the actions of site users, email recipients, and compile statistics about site usage and response rates.
From you: information such as your location, as well as other information, such as your preferred means of receiving messages through the Services (e.g., emails or text messages), is collected when you voluntarily provide this information. Unless combined with Personal Information, this information does not personally identify you or any other user of the Service.
By aggregating information: aggregated personal information does not personally identify you or any other user of the Service (for example, we may use Personal Information to calculate the percentage of our users who have chosen to receive messages by text messaging).
How We Disclose and Use Non-Personal Information
Because Non-Personal Information does not personally identify you, we may use and disclose Non-Personal Information for any purpose whatsoever. In some instances, we may combine Non-Personal Information with Personal Information (such as combining your name with your geographical location). If we combine any Non-Personal Information with Personal Information, the combined information will be treated by us as Personal Information as long as it is combined.
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IP ADDRESSES
Your IP Address is a number that is automatically assigned to the computer that you are using by your internet service provider (“IP Address”). An IP Address is identified and logged automatically in our server log files whenever a user uses the Services, along with the time of the visit and the page(s) that were visited. Collecting IP Addresses is standard practice on the internet and is done automatically by many web sites. We use IP Addresses for purposes such as calculating usage levels, helping diagnose server problems, and administering the Services. We may also use and disclose IP Addresses for all the purposes for which we use and disclose Personal Information. Please note that we treat IP Addresses, server log files and related information as Non-Personal Information, except where we are required to do otherwise under applicable law.
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THIRD PARTY SITES
This Privacy Statement does not address, and we are not responsible for, the privacy, information or other practices of any third parties. The inclusion of a link within the Services does not imply endorsement of the linked site by us or by our affiliates.
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ACCESSING AND CHANGING YOUR INFORMATION
How can you access or change your Personal Information?
If you would like to review, correct, update, delete or otherwise limit our use of your Personal Information that has been previously provided to us, you may contact us in accordance with the “Contacting Us” section below.
In your request, please make clear what information you would like to have changed, whether you would like to have your Personal Information deleted from our database or otherwise let us know what limitations you would like to put on our use of your Personal Information.
We will try to comply with your request as soon as reasonably practicable.
Please note that in order to comply with certain requests to limit the use of your Personal Information we may need to terminate your account with us and your ability to access and use the Services, and you agree that we will not be liable to you for such termination or for any refunds of prepaid fees paid by you.
Although we will use reasonable efforts to do so, you understand that it may not be technologically possible to remove from our systems every record of your Personal Information. The need to back up our systems to protect information from inadvertent loss means a copy of your Personal Information may exist in a non-erasable form that will be difficult or impossible for us to locate or remove.
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RETENTION PERIOD
We will retain your Personal Information for the period necessary to fulfill the purposes outlined in this Privacy Statement and our Terms of Service unless a longer retention period is required or allowed by law.
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UPDATES TO THIS PRIVACY STATEMENT
We may change this Privacy Statement. Please refer to the “LAST UPDATED” legend at the top of this page to see when this Privacy Statement was last revised. Any changes to this Privacy Statement will become effective when we post the revised Privacy Statement on the site, make it available through the Services, or otherwise notify you at the email address provided by you at the time you registered for the Services, whichever occurs earlier. Any change to this Privacy Statement will be effective for all information that we maintain, even information in existence before the change. Your use of the site and/or the App following these changes means that you accept the revised Privacy Statement.
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CONTACTING US
If you have any questions about this Privacy Statement, please contact us by email at help@CureFSHD.com.au. Please note that email communications are not always secure; so please do not include sensitive information in your emails to us.
Legal basis of processing
The Owner may process Personal Data relating to Users if one of the following applies:
- Users have given their consent for one or more specific purposes.
- provision of Data is necessary for the performance of an agreement with the User and/or for any pre-contractual obligations thereof;
- processing is necessary for compliance with a legal obligation to which the Owner is subject;
- processing is related to a task that is carried out in the public interest or in the exercise of official authority vested in the Owner;
- processing is necessary for the purposes of the legitimate interests pursued by the Owner or by a third party.
In any case, the Owner will gladly help to clarify the specific legal basis that applies to the processing, and in particular whether the provision of Personal Data is a statutory or contractual requirement, or a requirement necessary to enter into a contract.
Further information about retention time
Unless specified otherwise in this document, Personal Data shall be processed and stored for as long as required by the purpose they have been collected for and may be retained for longer due to applicable legal obligation or based on the Users’ consent.
Therefore:
- Personal Data collected for purposes related to the performance of a contract between the Owner and the User shall be retained until such contract has been fully performed.
- Personal Data collected for the purposes of the Owner’s legitimate interests shall be retained as long as needed to fulfill such purposes. Users may find specific information regarding the legitimate interests pursued by the Owner within the relevant sections of this document or by contacting the Owner.
The Owner may be allowed to retain Personal Data for a longer period whenever the User has given consent to such processing, as long as such consent is not withdrawn. Furthermore, the Owner may be obliged to retain Personal Data for a longer period whenever required to fulfil a legal obligation or upon order of an authority.
Once the retention period expires, Personal Data shall be deleted. Therefore, the right of access, the right to erasure, the right to rectification and the right to data portability cannot be enforced after expiration of the retention period.
The rights of Users based on the General Data Protection Regulation (GDPR)
Users may exercise certain rights regarding their Data processed by the Owner.
In particular, Users have the right to do the following, to the extent permitted by law:
- Withdraw their consent at any time. Users have the right to withdraw consent where they have previously given their consent to the processing of their Personal Data.
- Object to processing of their Data. Users have the right to object to the processing of their Data if the processing is carried out on a legal basis other than consent.
- Access their Data. Users have the right to learn if Data is being processed by the Owner, obtain disclosure regarding certain aspects of the processing and obtain a copy of the Data undergoing processing.
- Verify and seek rectification. Users have the right to verify the accuracy of their Data and ask for it to be updated or corrected.
- Restrict the processing of their Data. Users have the right to restrict the processing of their Data. In this case, the Owner will not process their Data for any purpose other than storing it.
- Have their Personal Data deleted or otherwise removed. Users have the right to obtain the erasure of their Data from the Owner.
- Receive their Data and have it transferred to another controller. Users have the right to receive their Data in a structured, commonly used and machine readable format and, if technically feasible, to have it transmitted to another controller without any hindrance.
- Lodge a complaint. Users have the right to bring a claim before their competent data protection authority.
Users are also entitled to learn about the legal basis for Data transfers abroad including to any international organization governed by public international law or set up by two or more countries, such as the UN, and about the security measures taken by the Owner to safeguard their Data.
Details about the right to object to processing
Where Personal Data is processed for a public interest, in the exercise of an official authority vested in the Owner or for the purposes of the legitimate interests pursued by the Owner, Users may object to such processing by providing a ground related to their particular situation to justify the objection.
Users must know that, however, should their Personal Data be processed for direct marketing purposes, they can object to that processing at any time, free of charge and without providing any justification. Where the User objects to processing for direct marketing purposes, the Personal Data will no longer be processed for such purposes. To learn whether the Owner is processing Personal Data for direct marketing purposes, Users may refer to the relevant sections of this document.
How to exercise these rights
Any requests to exercise User rights can be directed to the Owner through the contact details provided in this document. Such requests are free of charge and will be answered by the Owner as early as possible and always within one month, providing Users with the information required by law. Any rectification or erasure of Personal Data or restriction of processing will be communicated by the Owner to each recipient, if any, to whom the Personal Data has been disclosed unless this proves impossible or involves disproportionate effort. At the Users’ request, the Owner will inform them about those recipients.
Additional information about Data collection and processing
Legal action
The User's Personal Data may be used for legal purposes by the Owner in Court or in the stages leading to possible legal action arising from improper use of this Application or the related Services.
The User declares to be aware that the Owner may be required to reveal personal data upon request of public authorities.
Additional information about User's Personal Data
In addition to the information contained in this privacy policy, this Application may provide the User with additional and contextual information concerning particular Services or the collection and processing of Personal Data upon request.
System logs and maintenance
For operation and maintenance purposes, this Application and any third-party services may collect files that record interaction with this Application (System logs) or use other Personal Data (such as the IP Address) for this purpose.
More details concerning the collection or processing of Personal Data may be requested from the Owner at any time. Please see the contact information at the beginning of this document.
Changes to this privacy policy
The Owner reserves the right to make changes to this privacy policy at any time by notifying its Users on this page and possibly within this Application and/or - as far as technically and legally feasible - sending a notice to Users via any contact information available to the Owner. It is strongly recommended to check this page often, referring to the date of the last modification listed at the bottom.
Should the changes affect processing activities performed on the basis of the User’s consent, the Owner shall collect new consent from the User, where required.
Definitions and legal references
Personal Data (or Data)
Any information that directly, indirectly, or in connection with other information — including a personal identification number — allows for the identification or identifiability of a natural person.
Usage Data
Information collected automatically through this Application (or third-party services employed in this Application), which can include: the IP addresses or domain names of the computers utilized by the Users who use this Application, the URI addresses (Uniform Resource Identifier), the time of the request, the method utilized to submit the request to the server, the size of the file received in response, the numerical code indicating the status of the server's answer (successful outcome, error, etc.), the country of origin, the features of the browser and the operating system utilized by the User, the various time details per visit (e.g., the time spent on each page within the Application) and the details about the path followed within the Application with special reference to the sequence of pages visited, and other parameters about the device operating system and/or the User's IT environment.
User
The individual using this Application who, unless otherwise specified, coincides with the Data Subject.
Data Subject
The natural person to whom the Personal Data refers.
Data Processor (or Processor)
The natural or legal person, public authority, agency or other body which processes Personal Data on behalf of the Controller, as described in this privacy policy.
Data Controller (or Owner)
The natural or legal person, public authority, agency or other body which, alone or jointly with others, determines the purposes and means of the processing of Personal Data, including the security measures concerning the operation and use of this Application. The Data Controller, unless otherwise specified, is the Owner of this Application.
This Application
The means by which the Personal Data of the User is collected and processed.
Service
The service provided by this Application as described in the relative terms (if available) and on this site/application.
European Union (or EU)
Unless otherwise specified, all references made within this document to the European Union include all current member states to the European Union and the European Economic Area.
Legal information
This privacy policy relates solely to this Application, if not stated otherwise within this document.