Contribute to Important Friedreich Ataxia Research!
fara is promoting a market research opportunity aimed at understanding the experiences of people living with Friedreich Ataxia and their use of the National Disability Insurance Scheme (NDIS).
The research is being conducted by independent healthcare researchers, The Insights Loop, on behalf of a biopharmaceutical company.
fara is assisting with this project by facilitating communication and sharing invitations with our community to ensure your voices are heard in this important research.
If you have been diagnosed with or are caring for someone genetically diagnosed with FA and you would like to participate in the research, please read on.
There are two ways you can contribute to this research
One-hour virtual interview - 3 people required
15-minute online survey - 100 people required
One-hour virtual interview
During this stage, The Insights Loop is requesting help to ensure survey questions used in the market research are clear, understandable and relevant to those in the FA community. The Insights Loop is seeking three people to participate in a one-hour online interview, to:
Read through the survey before it is released and provide feedback on the questions
Be asked some follow-up questions on personal experience of the NDIS as someone living with/caring for someone with FA.
After completing of the interview, you will receive compensation of AUD 150 in the form of an e-gift card for your time and insights.
Please note only first three eligible applications received will be allocated a spot for this interview. Therefore, please register your interest now, should you wish to participate.
15-minute online survey
The Insights Loop are also seeking people to complete a 15-minute online survey on understanding the experiences of individuals living with Friedreich Ataxia and use of the NDIS.
The Insights Loop want to hear from 100 of you so please register your interest now and The Insights Loop will send you a link to the survey when it’s ready before it opens to everyone.
On completion of the survey, you will receive compensation of AUD 35 in the form of an e-gift card for your time and insights.
Why participate?
As someone with direct knowledge of what it is like to live with/or care for someone with FA and some understanding of the NDIS, your insights will help ensure the outcomes of this research reflect the real needs of those in the community. This is an opportunity to contribute to the understanding of this condition and help others who share your experiences.
Are you interested?
If you have been diagnosed with or are caring for someone genetically diagnosed with FA and you would like to participate in the research, please open the link below to register your interest for either the survey or the interview.
Participation in this research project is entirelyvoluntary and confidential and your answers will be treated anonymously.
If you have any further questions about the research, please feel free to reach out to info@theinsightsloop.com.
The Insights Loop Pty Ltd is an independent market research agency, which abides by the Australian Privacy Principles, the Medicines Australia Code of Conduct and the Research Society Code of Professional Behaviour. The contents of the interview are not intended to be promotional. The personal information you provide will be used only for the purposes of this research and your responses will be combined with those of other participants to improve the survey and provide de-identified results to the sponsoring company. In agreeing to participate you agree to treat all information discussed in the interview as confidential and not to disclose it to any third party. You also agree to not provide any details that could identify a patient, except to report an adverse event or product quality complaint.
Privacy is important to Insights Loop and your personal data shared will be used to facilitate the interview and to send to you the honorarium amount for your participation in the form of an e-gift card for AUD150. We are required to pass onto the sponsoring company details of any adverse events or product quality complaints that you mention in relation to any of their products, even if it has already been reported directly to the sponsor or regulatory authorities. You have the right to remain anonymous, but we may request that you provide further information if the event is serious, or if we must clarify anything. For further details of our privacy policy – see theinsightsloop.com/privacy-policy.