Terms & Privacy

YOUR PRIVACY

The Global Angelman Syndrome Registry handles personal information in accordance with Commonwealth and State and Territory Privacy legislation and is guided by the Australian Privacy Principles.

Personal information is information or an opinion that identifies or could reasonably identify an individual.

PURPOSE

The purpose of this Privacy Policy is to summarise how the Global Angelman Syndrome Registry manages personal information.

BACKGROUND

The Angelman Registry is a tool to help medical professionals and researchers learn more about individuals with Angelman Syndrome (AS). The Registry will create new opportunities to gain insight and understanding about AS, providing an important tool for both facilitating research and enabling clinical trial sponsors to quickly identify suitable patients for each study.

The Registry is a global initiative that will collect data on individuals with AS through a series of online surveys in order to build the largest and most comprehensive global collection of information on Angelman Syndrome to date.

The Global Angelman Syndrome Registry collects personal information to carry out one or more of its functions or activities, including:

• to facilitate connections between Angelman families, and researchers and clinicians in the Angelman community.
• to provide an international repository for Angelman syndrome clinical progression measures, service use and treatment use;
• to enhance understanding of Angelman Syndrome and inform the need for continuing professional development, education and training for clinicians involved in Angelman syndrome care.
• to enable planning, policy and service development.
• to promote to participants appropriate research opportunities for which they may be eligible.

COLLECTION OF PERSONAL INFORMATION

The Global Angelman Syndrome Registry collects personal information directly from participants and from Healthcare Professionals involved in their care. The types of personal information the Global Angelman Syndrome Registry collects include:

• contact details (for example, name, address, professional information, telephone numbers and email)
• demographic information (for example, gender and date of birth)
• clinical and developmental information (for example, motor skills, behaviour, sleep, medical conditions) and
• activity‐related information (attendance at Angelman or other clinics, medical tests, and participation in any research).

In conducting its activities, the Global Angelman Syndrome Registry will collect health and other sensitive information. For example, the Global Angelman Syndrome Registry collects medical history information from participants and may also access data from other sources about them. In all cases permission to collect information is done with the written informed consent of participants and/or their guardians.

SENSITIVE DATA PRACTICES

The Global Angelman Syndrome Registry collects fully identifiable personal information with the consent of their parent or caregiver using an online portal that is accessible through a two-factor password protected secure login. The persons entering their data have full control over what is entered and can update it at any time or put in a process for deletion of the records if they choose to withdraw from the registry. The individual will be given the option to consent to link their personally entered data with that of other Angelman syndrome research projects or clinical data sets, provided that they have obtained appropriate regulatory and ethical approval. 

The Global Angelman Syndrome Registry may also enable a nominated clinician to provide fully identifiable personal information with the consent of the parent/ guardian using an online portal that is accessible through a two-factor password-protected secure login.  Those entering clinical data will be nominated by the parent/ guardian and provided comprehensive training. 

At any point, parents/ caregivers can withdraw their permission for further data collection and participation.  The Data Operations Manager appointed by the Global Angelman Syndrome Partnership Executive will act as Data Custodian and perform quality assurance processes on records to identify potential errors or missing data. 

DISCLOSURE 

The Global Angelman Syndrome Registry only discloses personal information for the primary purpose for which it was collected, or for a secondary purpose as required or permitted by law.

For example, the Global Angelman Syndrome Registry may disclose personal information to third parties it engages to assist it in performing its functions, most often related to enhancing clinical services and for research purposes. Where disclosure takes place the Global Angelman Syndrome Registry aims to include protective provisions regarding the handling of personal information in contracts with third parties.

When conducting a survey on behalf of a third party, the Global Angelman Syndrome Registry does not disclose personal information to that third party.

When the Global Angelman Syndrome Registries Governance Committee has approved a future research project, personal information of eligible participants will not be disclosed to that third party.  The Global Angelman Syndrome Registry will contact eligible participants with the details of the potential research and the participant will then contact the third party directly to express their interest.

WEBSITE PRIVACY STATEMENT

Your privacy and confidentiality

We will keep any information confidential and securely stored. We will use and retain information that we collect about you for this project, and with your permission store it in the Global Angelman Syndrome Registry.

The Global Angelman Syndrome Registry is a secure platform that allows data collection which can also be used to share the data with other researchers, as approved by the Global Angelman Syndrome Registry Governance Committee, to maximise the benefit of the project in alignment with the Australian Government’s Open Access Policy. If third parties are given access to your data, their databank must provide the same level of data security and protection of your privacy and confidentiality as for this project.

Neither we nor they will disclose your personally identified information without your permission, except in compliance with the law. Where we transfer your data to approved collaborators we will do so in a format where you are not identifiable to anyone under normal circumstances. What this means is that your data will be functionally anonymous if intercepted. However, we will attach a code to it so that we will be able to link it back to you. The files that allow us to break the code are held in a secure and separate place and are password protected so it is highly unlikely that anyone could gain access to your information. No personal information about you, such as your name and address will be shared with anyone outside of your recruiting site or an authorised member of the research team or the databank custodian and their staff.

All of your child/ adult’s collected information will be kept for at least 10 years after the end of the study. We may keep the information for longer than the minimum period if it remains useful for research. Australian privacy law gives you the right to request access to your child/ adult’s information that has been collected and stored. The law also gives you the right to request corrections to any information about your child/ adult that you disagree with. Please contact the team using the details on the final page of this document if you need assistance accessing your information. With your permission your child/ adult’s treating clinician and/or other medical professional will be notified of your child/ adult’s participation in this study and of any clinically relevant information.

COOKIES

A record of each visit to the Global Angelman Syndrome website is logged – this is a small data file known as a cookie. A cookie does not identify individuals personally, but it does identify computers. Browser setting can be adjusted to disable cookies.

The following information from cookies is recorded to compile statistical information about the use of the Global Angelman Syndrome website. It is not used for any other purpose.

• IP address and/or domain name
• Operating system (type of browser and platform)
• The date, time and length of visit to the Global Angelman Syndrome website
• Pages and resources accessed, as well as documents downloaded.

ACCESS AND CORRECTION

The Global Angelman Syndrome Registry takes all reasonable steps to maintain the accuracy of personal information it holds. Individuals are encouraged to contact the Data Operations Manager, Global Angelman Syndrome Registry if the personal information held is incorrect.

Parents/ carers in the Global Angelman Syndrome Registry can view and edit the information they provide. 

COMPLAINTS AND CONCERNS

Any concerns about the Global Angelman Syndrome Registry handling of personal information should be directed to the data curator in the first instance, Dr Megan Tones, curator@angelmanregistry.info.  Dr Tones may require complaints to be submitted in writing. After the Global Angelman Syndrome Registry receives all the relevant information, it will endeavour to resolve the complaint as soon as reasonably practical.

The website of the Office of the Australian Information Commissioner (OAIC) is an additional source of information www.oaic.gov.au. If an individual is not satisfied with how the Global Angelman Syndrome Registry has handled their complaint, they may wish to contact the OAIC.

RESPONSIBILITIES

All Global Angelman Syndrome Partners, Project Staff and associated entities will adhere to the Global Angelman Syndrome Privacy Policy at all times.

EU REPRESENTATIVE

Anna Walsh, Ireland

Contact Anna@cureangelman.org.au

RELATED DOCUMENTS

Privacy Act 1988 (Cth) (Privacy Act)*

Australian Privacy Principles (Office of the Australian Information Commissioner 2014)

REFERENCES

Office of the Australian Information Commissioner. (2014, 22/7/2019). “Privacy Principles Guidelines (combined 2019).”   Retrieved 17 January, 2021, from https://www.oaic.gov.au/privacy/australian-privacy-principles-guidelines.

Review date Sept 1, 2024