ausEE Inc. supports research by sharing information about studies that people may be eligible to participate in.
Current opportunities
EoE Research Survey
Researchers from the University of Wollongong invite you to take part in an online survey to explore your experiences and needs of living with Eosinophilic Oesophagitis (EoE) or caring for someone with EoE. Help raise awareness and inform the development of future resources and supports for individuals with EoE.
Who can participate in the research?- Adults aged ≥ 16 years OR Carers of children (< 16 years) - Diagnosed with EoE
What does participation involve?- Click the link for your age group and complete the online survey - The survey will ask you to complete questions about your background, diagnosis, treatment experience and quality of life- Your answers will be anonymous, and you will not be identifiable from the answers you give- Participation is voluntary and you can withdraw at any time and do not have to share any information you are uncomfortable sharing- The survey will take approximately 20 mins to complete
If you would like more details or have any questions about this study contact: Annabel Clancy, Chief Investigator, aclancy@uow.edu.au
The University of Wollongong Ethics Committee has approved this study. If you have any complaints or concerns about this research you can contact the UOW Ethics Officer via email at uow-humanethics@uow.edu.au or on +61 2 4239 2080.
Survey for >16yearsSurvey for Carers < 16 years
Who can participate in the research?- Adults aged ≥ 16 years OR Carers of children (< 16 years) - Diagnosed with EoE
What does participation involve?- Click the link for your age group and complete the online survey - The survey will ask you to complete questions about your background, diagnosis, treatment experience and quality of life- Your answers will be anonymous, and you will not be identifiable from the answers you give- Participation is voluntary and you can withdraw at any time and do not have to share any information you are uncomfortable sharing- The survey will take approximately 20 mins to complete
If you would like more details or have any questions about this study contact: Annabel Clancy, Chief Investigator, aclancy@uow.edu.au
The University of Wollongong Ethics Committee has approved this study. If you have any complaints or concerns about this research you can contact the UOW Ethics Officer via email at uow-humanethics@uow.edu.au or on +61 2 4239 2080.
Survey for >16yearsSurvey for Carers < 16 years
RiskED Study
Ever had a food allergy? Live in Australia? Between 14 – 26 years old?
Murdoch Children’s Research Institute invites you to take part in an anonymous survey to help us better understand eating behaviour among young people with a food allergy.
The anonymous survey takes about 20 minutes. Follow this link for more details.
You can also save the survey and complete it later. Make sure to screenshot your access code and follow the prompts to get your return link.
Murdoch Children’s Research Institute invites you to take part in an anonymous survey to help us better understand eating behaviour among young people with a food allergy.
The anonymous survey takes about 20 minutes. Follow this link for more details.
You can also save the survey and complete it later. Make sure to screenshot your access code and follow the prompts to get your return link.
We want to hear from teenage siblings in Australia
Growing up alongside a brother or sister with a long-term condition often builds siblings’ empathy, resilience, and a deep sense of care for their family. But it can also raise big questions and emotions that they don't always have support to work through. When reliable information and support isn't easy to find, siblings may turn to social media or AI tools for answers and not everything they find there is accurate or helpful.
Right now, there isn't enough research on how siblings in Australia find information and access support, which makes it hard to know what kind of resources would help. We want to change that. By understanding where siblings look for information, we can build more resources designed around siblings' real experiences.
This research is led by Maddison Smith (PhD Candidate) at the University of New South Wales, in collaboration with Siblings Australia, Genetic Alliance Australia and Belongside Families.
- What's involved: An online, anonymous questionnaire that takes around 10 minutes, asking about where siblings look for information and how they use social media and AI tools.
- Who can take part: Siblings aged 12–18 years, living anywhere in Australia, currently living with a brother or sister who has a long-term illness, disability, or health condition.
Siblings can go in the draw to win one of two $50 gift cards after completing the questionnaire. Their responses are completely anonymous and only used for this research project - even if they enter the draw, their name is never linked to their answers. If you or your child have any questions or concerns about privacy, please don't hesitate to reach out to Maddison at maddison.c.smith@unsw.edu.au.
Your child can take part here.
Approved by the University of New South Wales Human Research Ethics Committee (iRECS10937)
Oral Health in Tube Feeding Research
Have you heard about the opportunity to be part of a research study looking at oral health in long term enteral feeding?
Researchers from the Royal Brisbane and Women’s Hospital and University of Queensland are undertaking a study seeking to better understand oral health for people who are tube fed and to identify ways healthcare services can provide better support in the future.
You may be eligible to take part if you or the person you care for are: - 18 years or older, - have been receiving tube feeding outside of hospital for at least three months, and- live in Australia.
Taking part involves completing a one-off on-line or paper-based questionnaire that will take about 20-30mins to complete.
If you’re interested in taking part more information and the online survey can be found at https://redcap.link/tubefeedoralhealth. To receive a paper copy of the study materials or for any questions you have about the study, you are invited to contact Emma.Osland@health.qld.gov.au
You may be eligible to take part if you or the person you care for are: - 18 years or older, - have been receiving tube feeding outside of hospital for at least three months, and- live in Australia.
Taking part involves completing a one-off on-line or paper-based questionnaire that will take about 20-30mins to complete.
If you’re interested in taking part more information and the online survey can be found at https://redcap.link/tubefeedoralhealth. To receive a paper copy of the study materials or for any questions you have about the study, you are invited to contact Emma.Osland@health.qld.gov.au
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Exploring nutrition management of gastrointestinal symptoms alongside a diagnosis
of EDS, POTS and/or MCAS
The University of Sydney is conducting a research project led by Professor Sharon Carey to explore the nutrition needs and preferred treatment options of people who experience gastrointestinal symptoms affecting oral nutrition intake alongside a diagnosis of:
- Ehlers-Danlos Syndrome (EDS) - Postural Orthostatic Tachycardia Syndrome (POTS) - Mast Cell Activation Syndrome (MCAS)
The study also seeks insights from health professionals who provide care to people with these conditions.
Who Can Participate:
People with lived experience: Adults aged 18 years or older who have gastrointestinal symptoms impacting nutrition intake, together with a diagnosis of EDS, POTS and/or MCAS.
Health professionals: Clinicians with experience supporting people with the above conditions and symptoms.
What Participation Involves:
- A short 5-minute survey about your background and experience. - A follow-up conversation with a member of the research team to answer any questions. - If you choose to take part, a 60-minute online interview discussing your experiences, knowledge, and perspectives on nutrition care and gastrointestinal symptom management. - Interviews are audio-recorded with your consent. - There is no financial reimbursement for participation.
How to Express Interest:
For more information and to express your interest: https://redcap.sydney.edu.au/surveys/?s=JAYE4EXXY3RLY97L
For further information, please contact: Professor Sharon Carey Discipline of Nutrition and Dietetics, School of Nursing Faculty of Medicine and Health, University of Sydney Email: sharon.carey@sydney.edu.au Phone: +61 2 9515 7863
This project has been approved by the University of Sydney Human Research Ethics Committee (HREC) 2026/HE001102.
Taste Matters: Evaluating Flavour Acceptability in Oral Liquid Medicines
Researchers from the University of Newcastle are seeking potential participants for their research project ‘Taste Matters: Evaluating Flavour Acceptability in Oral Liquid Medicines’. This research aims to find out which flavours different people like. This will help them choose better flavours for liquid medicines taken by mouth, so they taste nicer and are easier and more pleasant to take.
Who can participate in the research?- This research study invites participants, aged 12 years and older, to complete a survey.- People can take part whether or not they have any health conditions.- People who cannot participate include those who are younger than 12 years. What does participation involve?- To participate, click the link for your age group (18+ years or 12–17 years) and complete the online survey.- The survey will ask you to complete 10 questions about your background, medication experience, and medication flavour preferences.- Your answers will be anonymous; you will not be identifiable from the answers you give.- The survey should take approximately 2 to 5 minutes to complete. Survey for ages 18+Survey for ages 12 to 17
If you would like more information on this study of have any questions, please contact: Professor Susan Hua (Chief Investigator)susan.hua@newcastle.edu.au
Who can participate in the research?- This research study invites participants, aged 12 years and older, to complete a survey.- People can take part whether or not they have any health conditions.- People who cannot participate include those who are younger than 12 years. What does participation involve?- To participate, click the link for your age group (18+ years or 12–17 years) and complete the online survey.- The survey will ask you to complete 10 questions about your background, medication experience, and medication flavour preferences.- Your answers will be anonymous; you will not be identifiable from the answers you give.- The survey should take approximately 2 to 5 minutes to complete. Survey for ages 18+Survey for ages 12 to 17
If you would like more information on this study of have any questions, please contact: Professor Susan Hua (Chief Investigator)susan.hua@newcastle.edu.au
Help shape the future of EoE care
Your experience matters! If you're an adult diagnosed with eosinophilic esophagitis (EoE) or someone caring for a person with the condition, we need your voice. Share your journey and thoughts on your needs in our research survey. Help shape the future of patient education.
Take the survey here.
Participate in the Digestive Health Biobank
Researchers at the University of Newcastle are currently recruiting participants for the Digestive Health Biobank.
They are looking for a wide range of people to participate. - Age: 18-85 years old - Not pregnant or breastfeeding
- People with no digestive symptoms - a "control" helps understand what a healthy comparison is as to gauge their results.
- People suffering from digestive symptoms - with symptoms but no diagnosis.
- People diagnosed with digestive diseases including: Irritable Bowel Syndrome (IBS), Functional Dyspepsia, Gastroparesis, Eosinophilic Gastrointestinal Diseases (EGIDs) such as Eosinophilic Oesophagitis (EoE), Eosinophilic Gastritis (EoG), Eosinophilic Colitis (EoC) etc. Participation is completely voluntary. - They can work around your schedule and commitments - You can stop at any time you choose. - Whatever you decide, it will not affect your medical care in any way. For more information, visit the Centre of Research Excellence in Transforming Gut Health or contact the team at the Digestive Health Biobank on:digestive.health@newcastle.edu.au(02) 4042 0811(02) 4042 0491 You can participate by completing the Digestive Health and Wellbeing Survey.
They are looking for a wide range of people to participate. - Age: 18-85 years old - Not pregnant or breastfeeding
- People with no digestive symptoms - a "control" helps understand what a healthy comparison is as to gauge their results.
- People suffering from digestive symptoms - with symptoms but no diagnosis.
- People diagnosed with digestive diseases including: Irritable Bowel Syndrome (IBS), Functional Dyspepsia, Gastroparesis, Eosinophilic Gastrointestinal Diseases (EGIDs) such as Eosinophilic Oesophagitis (EoE), Eosinophilic Gastritis (EoG), Eosinophilic Colitis (EoC) etc. Participation is completely voluntary. - They can work around your schedule and commitments - You can stop at any time you choose. - Whatever you decide, it will not affect your medical care in any way. For more information, visit the Centre of Research Excellence in Transforming Gut Health or contact the team at the Digestive Health Biobank on:digestive.health@newcastle.edu.au(02) 4042 0811(02) 4042 0491 You can participate by completing the Digestive Health and Wellbeing Survey.
Other opportunities to participate in research
EGID Partners
EGID Partners is an online cohort of patients with eosinophilic gastrointestinal diseases (EGIDs) brought to you in a collaboration between Patient Advocacy Groups and Researchers.
EGID Partners engages patients to help guide research. People without EGIDs are also encouraged to join so data can be compared. Together we can advance the care of conditions like eosinophilic esophagitis (EoE), eosinophilic gastritis (EoG), and eosinophilic colitis (EoC). ausEE Inc. is proud to be a patient advocacy group partner of EGID Partners.
Visit egidpartners.org to learn more and to become a Partner!
EGID Partners engages patients to help guide research. People without EGIDs are also encouraged to join so data can be compared. Together we can advance the care of conditions like eosinophilic esophagitis (EoE), eosinophilic gastritis (EoG), and eosinophilic colitis (EoC). ausEE Inc. is proud to be a patient advocacy group partner of EGID Partners.
Visit egidpartners.org to learn more and to become a Partner!
Rare Patient Voice
Are you a patient or family caregiver with something to say?
Make your voice heard by participating in paid surveys, interviews and online communities!
Start talking to the right people. It's free!
ausEE Inc. is a referral partner of Rare Patient Voice and we will receive a $10 contribution for every eligible person who signs up through this referral link.
