Providing your consent to join a group discussion

You are invited to take part in a group discussion about your experience with mitochondrial disease (mito). This project is a collaboration between Mito Foundation and The Centre for International Economics.
Together, will use the findings of the discussion to help us to understand more about how mito impacts on people and share these with others, including politicians, researchers and health professionals. Ultimately the project aims to secure support for action to improve the lives of people impacted by mito.
What will be involved in the discussion
You can choose to join a discussion group at the time that suits you. Either:
Wednesday 30 August at 7pm-8pm AEST or
Thursday 31 August at 1.30pm-2.30pm AEST

The discussion will be with other members of the mito community and will be facilitated by Sarina Lacey and Dennis McCarthy (from The CIE) supported by Clare Stuart (from the Mito Foundation team).
The discussion will cover the following topics:
- what changed for you when you  (or someone you care for) received a diagnosis of mito
- the way that mito has impacted on your overall health and wellbeing
- how mito affects your everyday life, including education, work and your social life
- the supports you need from family and friends as well as funded supports
- how often you visit different health professionals including specialists, your GP, hospitals and allied health.
The discussion will also give you an opportunity to share your hopes for this project.

The discussion will be recorded to help the project team learn as much as possible from the group. At the completion of the project in late 2023 the recording will be destroyed.
There are no right or wrong answers – we are interested in your genuine views and experiences. The discussion group will run for approximately 1 hour.
After the discussion, we will send a summary of what we learnt and give you an opportunity to review this. You may want to add to what you said in the discussion or correct something we have misunderstood.
Keeping your responses confidential
Other participants in the discussion will hear what you say. Other than this, what you say during the discussion will remain confidential. We will exclude your name and other details that could identify you from the notes of the discussion. What we will learn in the discussion will be included in the report of the project that will be published on the Mito Foundation website. If we use a direct quote from the discussion, we will remove any identifying information.
Giving your consent for this discussion
Whether or not you take part is completely your choice. Your decision will not affect your relationship with Mito Foundation or with mito health professionals, either now or in the future.
You can withdraw your consent at any time in the future by contacting Mito Foundation (for example, via email info@mito.org.au). If you withdraw your consent, we will try to remove your contributions from the discussion notes. We will also remove any quotes or case studies related to you from our publications and submissions.

Question Title

* 1. Your details

Question Title

* 2. Do you consent to take part in the group discussion as described above?

 
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