Participant Information Sheet and Consent Form

IMPROVE-SCA

Aim 1: Healthcare professional survey

Non-Interventional Study - Adult providing own consent

Garvan Institute of Medical Research

Participant Information Sheet/Consent Form

Title	IMPROVE-SCA
Short Title	Improving outcomes and survivorship following sudden cardiac arrest in the young
Protocol Number	2025/ETH01313
Project Sponsor
Coordinating Principal Investigator/ Principal Investigator	A/Prof Jodie Ingles
Associate Investigator(s)	Dr Laura Yeates Jessica Finney Natalie Stewart Dr Rosalind Case Prof John Atherton Prof Janet Bray Dr Susie Cartledge A/Prof Mark Dennis A/Prof Belinda Gray A/Prof Haris Haqqani Prof Andre La Gerche Dr Sonali Munot Dr Ziad Nehme A/Prof Elizabeth Paratz Dr Vimal Patel Dr Kathryn Waddell-Smith Prof Jamie Vandenberg Julie Hughes
Location	Garvan Institute of Medical Research 384 Victoria Street, Darlinghurst NSW 2010

Part 1: What does my participation involve?

Introduction

You are invited to take part in this research project, IMPROVE-SCA, as a healthcare professional involved in the care of individuals and families after sudden cardiac arrest (SCA) in the young (<50 years). This research project aims to improve clinical pathways of care for survivors and family members affected by SCA. We aim to understand current practice/services that exist for SCA families and identify gaps in care.

This Participant Information Sheet/Consent Form tells you about the research project. It explains the tests and research involved. Knowing what is involved will help you decide if you want to take part in the research.

Please read this information carefully. Ask questions about anything that you don't understand or want to know more about.

Participation in this research is voluntary. If you don't wish to take part, you don't have to. Whether or not you take part will not affect your relationship with the investigator team.

If you decide you want to take part in the research project, you will be asked to sign the consent form and then will be led to the demographic questions and survey questions.

By signing it you are telling us that you:
• Understand what you have read
• Consent to take part in the research project
• Consent to the tests and research that are described
• Consent to the use of your personal/ demographic information described.

You can download a copy of this Participant Information and Consent Form to keep.

What is the purpose of this research?

SCA is a devastating event and a significant public health issue in Australia. SCA care requires a highly multidisciplinary and coordinated model including routine checking and monitoring, and a strong focus on survivorship. A priority area highlighted in Australia is the critical lack
of coordination of care following a SCA. There are no national systematic clinical pathways, several critical gaps and limited to no support to navigate care. This exacerbates health disparities, whereby families with greater health literacy and resources, are often those who find appropriate care.

This study aims to understand current practice/services that exist for SCA families and identify gaps in care. We hope to recruit at least 100 healthcare professionals with a minimum of 10 per healthcare professional group.

This research has been funded by the Medical Research Future Fund (MRFF) Cardiovascular Health Mission (MRF2034307, CIA Ingles).

What does participation in this research involve/ what do I have to do?

You have been invited to participate in this study as you are a healthcare professional involved in the care of SCA. This study is open to all types of healthcare professionals involved in the care of families after SCA including clinicians, ambulance, nursing and allied health.

This involves completing a survey which has basic demographics questions and then questions about sudden cardiac arrest services. This includes questions regarding your clinical practice. This is an online questionnaire which will take approximately 20 minutes to complete and you will be led to these questions after signing the consent form.

This research project has been designed to make sure the researchers interpret the results in a fair and appropriate way and avoids study doctors or participants jumping to conclusions. There are no costs associated with participating in this research project, nor will you be paid.

Do I have to take part in this research project?

Participation in any research project is voluntary. If you do not wish to take part, you do not have to. If you start the survey and don't finish, then any information submitted will be used by the research team. If you don't wish for any data to be collected then you will need to contact the research team. You do not need to tell us the reason why. Whatever decision you make, it will not affect your relationship with the research team. If you wish your information will be removed from our study records. It will not be included in the study results, unless we have analysed and published the results.

What are the possible benefits of taking part?

There will be no clear benefit to you from your participation in this research. However, participating can contribute to the overall knowledge in the field and in turn benefit future individuals and families impacted by SCA.

What are the possible risks and disadvantages of taking part?

We do not anticipate any risks or disadvantages of taking part.

What happens when the research project ends?

Involvement in the study will end after the participant has completed the survey. Your survey responses will be collected using REDCap. REDCap is a secure, web-based, non-commercial, data management tool designed for research purposes.

Part 2: How is the research project being conducted?

What will happen to information about me?

All research data will be stored securely in access-controlled databases and servers, either on-premises or in approved cloud-based services managed by the Garvan Institute of Medical Research. Only authorised study team members will have access to the data.

By signing the consent form you consent to the relevant research staff collecting and using personal information about you for the research project. Any information obtained in connection with this research project that can identify you will remain confidential. Your information will only be used for the purpose of this research project and it will only be disclosed with your permission, except as required by law.

It is anticipated that the results of this research project will be published and/or presented in a variety of forums. In any publication and/or presentation, information will be provided in such a way that you cannot be identified, except with your permission.

Complaints and compensation

The conduct of this study at Garvan Institute of Medical Research has been authorised by Garvan Human Research and Governance Office. If you experience any distress as a result of participating in this research study, contact the study team who will assist you. You may also be able to seek compensation through the courts.
Any person with concerns or complaints about the conduct of this study may also contact Dr Rayson Tan, Manager, Research Ethics, Governance and Integrity at the Garvan Institute of Medical Research.

Who is organising and funding the research?

This research project is being conducted by Garvan Institute of Medical Research in the Ingles Laboratory Department.

No member of the research team will receive a personal financial benefit from your involvement in this research project (other than their ordinary wages).

Who has reviewed the research project?

All research in Australia involving humans is reviewed by an independent group of people called a Human Research Ethics Committee (HREC). The ethical aspects of this research project have been approved by the HREC of St. Vincent's Hospital Sydney.

This project will be carried out according to the National Statement on Ethical Conduct in Human Research (2025). This statement has been developed to protect the interests of people who agree to participate in human research studies.

Further information and who to contact

The person you may need to contact will depend on the nature of your query. If you want any further information concerning this project or if you have any problems which may be related to your involvement in the project, you can contact the principal study investigator on (02) 9056 4099 or any of the following people.

For matters relating to research at the site at which you are participating, the details of the local site complaints person are:

Complaints contact person:

If you have any complaints about any aspect of the project, the way it is being conducted or any questions about being a research participant in general, then you may contact:

Name	Dr Rayson Tan
Position	Manager, Research Ethics, Governance and Integrity
Telephone	(02) 9295 8197
Email	ra.tan@garvan.org.au

Reviewing HREC approving this research and HREC Executive Officer details

Reviewing HREC name	St.Vincent's Hospital HREC
HREC Executive Officer	Research Officer
Telephone	02 8382 4960
Email	svhs.research@svha.org.au

Part 3: Future Research

I would be happy to be contacted regarding future research opportunities in this area, such as questionnaires, surveys, interviews and focus groups. (There will be the opportunity to opt out of this at a future time).

* must provide value

Yes. Contact at

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I give permission for my data to be used in future studies with appropriate approval from a Human Research Ethics Committee (HREC).

Yes

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Part 4: Declaration by Participant

I have read the Participant Information Sheet or someone has read it to me in a language that I understand.

I understand the purposes, procedures and risks of the research described in the project.

I have had an opportunity to ask questions and I am satisfied with the answers I have received.

I freely agree to participate in this research project as described and understand that I am free to withdraw at any time during the project without affecting my future health care.

I understand I can download a copy of this consent form for my records.

Name:

Signature:

Date:

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You have selected an option that triggers this survey to end right now.

To save your responses and end the survey, click the 'End Survey' button below. If you have selected the wrong option by accident and/or wish to return to the survey, click the 'Return and Edit Response' button.