CCA-Swinburne Health Literacy Survey
Crohn’s & Colitis Australia (CCA) is undertaking a major 4–year research project in collaboration with Swinburne University of Technology to improve the information and services that are provide to people with Crohn’s and colitis.
The first stage is to undertake an important survey of the health literacy of people living with IBD or caring for someone who has IBD. We will study how CCA can make it easier for people living with IBD and their carers to access, understand and use health information and services. The project will then implement consumer information materials and interventions to address health literacy gaps.
If you are 15 years or older and living with IBD, or you are someone who is a carer for a person with IBD, you are invited to complete an online questionnaire. You will be asked questions about how you use health services, talk with doctors and other healthcare professionals and how you look after your health. The questionnaire will take about 20 minutes to complete.
Expressive Writing Intervention for IBD Patients to Cope with COVID-19 Distress
Do you have IBD (Crohn’s disease, ulcerative colitis or indeterminate colitis)? Are you worried about the recent COVID-19 pandemic? Deakin University are seeking people who would like to test an online writing intervention aiming to reduce worry associated with the COVID-19 pandemic.
If you have IBD (Crohn’s disease, ulcerative colitis or indeterminate colitis), are 18 years of age or older, worry about the COVID-19 pandemic, receive your healthcare in Australia, and have access to the internet, you are eligible to participate. However, please note the study is only addressed to people with mild to moderate levels of distress as this intervention is not suitable for people with severe distress.
The findings from this study will provide data on the usefulness of a simple online intervention for people with IBD.
To express interest or if you have any further questions about this research, please contact us via [email protected].
How has coronavirus (COVID-19) impacted on the management of your gastrointestinal condition?
We are recruiting participants who are at least 18 years of age, diagnosed with a gastrointestinal condition, and fluent in English to participate in this study.
The purpose of this international collaborative study is to better understand the impact of the COVID-19 pandemic for those living with a gastrointestinal condition.
Participation in this study will involve completing an online questionnaire on three occasions (now, and then in 6 and 12 months time) that will take approximately 40 minutes to complete.
To participate, please click on the link: www.gicovid19study.com
For more information, please contact the research team:
Dr Simon Knowles, Swinburne University of Technology (Melbourne, Australia), ph: +613 9214 8206, email: [email protected]
The study has attained ethics approval from Swinburne University of Technology, Melbourne, Australia.
Are you an IBD (Inflammatory Bowel Disease) patient living in Australia?
CCA would like to inform you that A/Prof Jakob Begun, Prof Rupert Leong and Dr Yoon An are currently conducting a National Survey on IBD patients regarding how the COVID-19 pandemic has affected IBD patients. Your contribution and thoughts will be very valuable.
Please follow the link to participate in the survey – https://www.surveymonkey.com/r/ibdcovid19
Measuring parenting stress in parents of children with chronic illness: A psychometric study
Like many other chronic conditions, parents of children with bowel disease rate significantly higher parenting stress than those with healthy children. Heightened parenting stress has been strongly associated with higher ratings of functional disability, and poorer quality of life (Cousino et al., 2012; Pinquart, 2018); as well as poorer outcomes for interventions focused on symptoms (Langer et al., 2009; Mullins et al., 2007).
To enable greater understanding of parenting stress and effective treatment, it is essential to first establish effective measures to capture it. A number of systematic reviews (Eccleston et al. 2012; 2015; Golfenshtein et al., 2016; Law et al., 2014) have indicated that parenting stress is amenable to intervention, however, due to the poor quality of the evidence it is not clear which techniques are most effective. In the present study we aim to investigate the two most popular measures of parenting stress to determine their validity in this population and improve future research.
Organisation/Institution: Murdoch University
Study purpose/aims: To evaluate the validity of the 2 most popular parenting stress measures for those with chronically ill children, both of which currently lack adequate support to be widely used.
Location of study: Anywhere with internet access
What is involved for the participant? A 15 minute self-report questionnaire, comprised of 10 demographic questions, 2 parenting stress scales and a measure of functional disability.
To receive more information, participants should contact: Amber English (student researcher) email: [email protected], phone: 0419 784 880
Survey: Health and Anxiety through COVID-19
COVID-19 has affected our everyday lives.
To help understand whether this worry helps or harms community members, researchers from Central Adelaide Local Health Network and the University of NSW have developed a survey to capture insights into how the pandemic has affected many aspects of their everyday life.
If you have 15 minutes, you’re encouraged to share your thoughts through this anonymous survey.
Researchers at Deakin University are looking for adults over the age of 18 with IBD to complete a survey on fatigue and their attitudes towards and experiences with psychological therapy. The survey will take 10 – 15 minutes, and responses will help inform researchers on how to best develop an intervention to manage the symptom of fatigue in patients with IBD.
The Australian IBD Microbiome (AIM) Study
Research Participants Needed!
We are seeking research participants to learn about the changes in the human microbiome in inflammatory bowel disease (IBD). If we can determine how to prevent or treat disease, then we have the potential to positively change health outcomes for many future generations!
- We are looking for a) participants who have an IBD diagnosis, are between the ages of 6 and 80 years old and receiving healthcare in Australia, b) family members of IBD patients and c) healthy controls
- You must be intending to reside in Australia for the next 2 years
- Be willing to have your vital signs, height, weight, medical history collected
- Be willing to complete a series of lifestyle and diet related questionnaires
- Be willing to provide blood samples at 0, 12 and 24 months, and oral swabs and stool samples every 3 months (sample packs provided).
To learn more about this study and to find out if you can take part, please contact Professor Georgina Hold at [email protected] for more information.
This study has HREC approval – 2019/ETH11443 and ANZCTR code ACTRN12619000911190
The DIVERSITY Study
If you experience flares from Crohn’s disease, the DIVERSITY clinical research study may be for you. this study is evaluating a once-daily oral investigational drug to see if it improves the signs and symptoms of Crohn’s disease by reducing the immune response that causes inflammation in the digestive system.
Learn more and see if you may qualify at https://www.myibdstudy.com/en-AU/Public/Home/Diversity.
Patient Needs and Perceptions
Researchers at The University of Newcastle are interested in learning about the needs of patients and their perception of the role of pharmacists in the management of IBD.
We are looking for participants who have an IBD diagnosis and are 18 years of age or older who are fluent in English to complete our survey. Your participation in this survey will make an important contribution to the research and provide valuable information to optimising the provision of IBD care.
The survey involves questions on IBD history, management and control, the impact IBD has on quality of life and patient perception of the role of pharmacists in the management of IBD.
By completing this survey, you are providing consent for the information you provide to be used in the study. Your participation is voluntary and may stop at any time. It is expected that the survey will take approximately 20-25 minutes of your time. This study has been approved by the Human Research Ethics Committee of Hunter New England Health – 2019/ETH00167.
The survey and further information are available by clicking here.
Are You Living with Ulcerative Colitis (UC)?
If you have been diagnosed with UC for at least three months, you may be eligible for the Vega Study.
The purpose of this clinical research study is to evaluate the effectiveness and safety of investigational medicine in people with moderately to severely active UC.
Individuals between 18 and 65 years of age (inclusive) who are eligible and choose to participate will receive (at no cost) investigational medicine or a medicine approved for use in UC.
The approved medicine will serve as an active control to assess the effectiveness of the investigational medicine.
Participants will also receive study-required medical examinations and laboratory tests at no cost.
To learn more, contact:
St Vincent’s Hospital Melbourne, VIC,
Kylie Parker 03 9231 3529
Jacinta McMahon 03 9231 3518
Nepean Hospital, Kingswood, NSW
Catherine Hemmings: [email protected]
Princess Alexandra Hospital, Woolloongabba, Queensland
Teressa Hansen: [email protected]
The Mater Hospital, Brisbane, Queensland
Email [email protected] and ATTN: Natalie or ATTN: Sharyn Grossman
Living with IBD: Sex & Sexual Satisfaction
Researchers at Swinburne University of Technology are looking for participants over the age of 18 who are diagnosed with IBD, currently in a de facto relationship or marriage, sexually active and fluent in English, in order to help better understand the impact of IBD on sexual function and sexual satisfaction.
Up to 58% of individuals with IBD report impaired sexual functioning and reduced sexual satisfaction. The aim of this research is to explore various factors that may impact the relationship between sexual function and sexual satisfaction, such as; body image, self-esteem, relationship satisfaction, sexual communication, psychological distress and disease activity.
For more information, please contact the research team, led by Principle Investigator Dr Simon Knowles on, (03) 9214 8206, email: [email protected].
Stress & wellbeing in people with Crohn’s or colitis
Researchers at Deakin University are conducting a study of adults with Crohn’s disease or ulcerative colitis to better understand the influence of stress on wellbeing for people with IBD and whether mindfulness influences this relationship.
If you are over 18 and have Crohn’s disease or ulcerative colitis, we invite you to complete the on-line survey here.
Supportive writing intervention for Stoma patients
You are invited to participate in this research if you have a stoma (temporary or permanent) as a result of any medical condition or injury.
This study builds on previous research that shows that a writing exercise can provide benefit to people who have experienced a change to their bodies because of a health condition. There has been very little research conducted on how to support people who have a stoma and so this research will be used to examine the psychological impact of a one-off writing exercise for individuals with a stoma.
In order to take part in this research, you must live in New Zealand or Australia, have a stoma for at least the duration of the study (from the initial questionnaire and writing exercise to the final questionnaire one month later).
You must also be over the age of 18 years. You must be fluent at reading and writing in English in order to understand and complete the consent form, writing exercise and questionnaires.
If you wish to participate in this randomised controlled trial, click this link for more information or contact below:
Principal Investigator and Lecturer in Faculty of Medical and Health Science: Dr. Lisa Reynolds, [email protected], +64 9 923 4938
Co-Principal Investigator: Lauren Harris [email protected].
Diet & Gut Health
The University of Sydney is looking for individuals living with ulcerative colitis and those with no history of IBD aged 18 and above to participate in a study investigating the effects of diet on gut health.
This FREE program includes a medical screening and assessment of your body composition, diet, physical performance and health status. You will also be supervised by experienced health care professionals through the 12-week trial.
Assessments at three time points will take place at the Faculty of Health Sciences, University of Sydney, Lidcombe, while the rest of the study will be done at your own home.
To learn more about this study and to find out if you can take part, please contact Mr Kenneth Daniel: Phone: (02) 9351 9138 or Email: [email protected].
Use of cannabis in managing symptoms of IBD
Clinical researchers at the University of Sydney have launched a survey exploring IBD patient experiences and attitudes towards the use of cannabis as a way to manage symptoms of IBD.
We are looking for participants who have an IBD diagnosis, are 18 years of age or older and receive healthcare in Australia.
With a rising interest in alternative treatments for IBD, we hope to shed light upon rate of use, perceived effectiveness and attitudes towards use of cannabis for gastrointestinal symptoms in IBD patients in Australia. Participating in this survey will provide data that may inform future clinical trials of cannabis-based therapies for people living with IBD.
Your participation in the survey is completely voluntary, confidential and you may stop at any time. It is expected that the survey will take approximately 15-20 minutes of your time. This study has been approved by the University of Sydney Human Research Ethics Committee (Project ID: 2018/989).
Research will be led by Professor Iain McGregor, a leader in the medicinal cannabis field, alongside a Sydney-based team of academic researchers including several IBD specialist clinicians.
The survey and further information are available here.
Online Health Seeking Behaviour Study
Researchers at University of Buckingham in the UK and the University of Stellenbosch in South Africa are looking for people to take part in a study looking at the extent to which adults use the internet for health-related behaviours, including information seeking and social support.
The survey takes about 10 minutes to complete and anyone over 18 years of age can participate. This study is the second phase of a larger research project being conducted by researchers at the University of Buckingham in the UK and the University of Stellenbosch in South Africa.
Exercise and gut health study
Researchers at The University of Sydney are looking for people aged 18 years and over that have been diagnosed with Crohn’s disease or ulcerative colitis to participate in their exercise study.
The aim of the study is to investigate whether a 16-week progressive resistance training intervention can improve the quality of life and gut health (microbiome) in people with inflammatory bowel disease.
Participants will receive free exercise training sessions from accredited exercise physiologist (AEP) trainers plus numerous tests (free of charge) assessing body composition, physical fitness (e.g. cardiopulmonary endurance, muscle strength and power), inflammatory profile (blood and stool tests), and sleep.
The time commitment involved for the study is three 60-minute exercise sessions per week over a 16-week period and these sessions will be conducted in our Exercise Clinic at the Cumberland Campus located at 75 East Street, Lidcombe NSW. The sessions can be performed Monday to Friday in the mornings, afternoons as well as after normal working hours (5-9pm).
To be eligible for this study you need to meet the following criteria:
- Are aged 18 years or older.
- Have been diagnosed with either Ulcerative Colitis or Crohn’s Disease
- Not currently performing regular resistance training (i.e. at least one session per week)
- Not performing more than 150 minutes a week of moderate intensity cardio training (e.g. running, cycling, and swimming).
If you are ineligible based on the above criteria or cannot commit to this study, you still have the opportunity to be assessed and this will involve attending ONLY two assessment sessions.
To learn more about this study and find out if you can take part or to arrange a time for an assessment from our research team, please contact Dr Daniel Hackett: Phone: (02) 9351 9294 Email: [email protected].
Gut-Brain Axis IBD Study
Researchers at QIMR Berghofer Medical Research Institute are seeking adults aged 18-85 years who have been diagnosed with Inflammatory Bowel Disease (IBD), including Crohn’s Disease or Ulcerative Colitis.
The study aims to understand the relationship between the gut microbiome, IBD symptoms, and the brain, and whether this is intricately linked to levels of anxiety and stress.
Physical and Emotional Wellbeing
Researchers at Deakin University are interested in learning more about physical and emotional wellbeing in subgroups of IBD.
They are looking for male and female participants aged 18 years or older who are fluent in English to complete our questionnaire. The project involves looking at physical measures such as sleep and IBD activity and psychological measures such as stress and social support. Your answers to this questionnaire will help us in developing resources to manage IBD. Your participation is voluntary and may stop at any time. It is expected that the survey will take approximately 30 minutes of your time. The survey is available by clicking here.
For further questions about this research contact Dr Antonina Mikocka-Walus at [email protected].
IBDmindfulness: A new mindfulness study for young people with IBD and depression
Researchers at Mater Young Adult Health Centre in Brisbane are conducting a new study which might help the understanding and treatment of depression and other emotional symptoms in young people with Inflammatory Bowel Disease (IBD) as well as potentially improve inflammation associated with IBD.
The study is called IBDmindfulness and it is a trial of Mindfulness-based Cognitive Therapy (MBCT), an evidence-based mindfulness program which has shown effectiveness in treatment of depression and also holds promise in attenuating inflammation and improving the course of IBD.
IBDmindfulness program has been specifically developed by adapting MBCT to suit young people with IBD and depression.
Key features of the IBDmindfulness include:
1. It involves a group intervention that lasts for eight weeks. The group meets once a week for two hours, however much of the mindfulness practice is done outside of classes as participants engage in guided mindfulness practices between the weekly sessions.
2. Participants will learn how to pay attention with purpose, in each moment and most importantly, without judgment and recognize that holding onto some of their usual patterns of thinking could make them vulnerable to depression and stress.
3. The study aims to recruit 64 patients aged 16-29 with IBD and at least mild symptoms of depression as mindfulness program may help both conditions.
If you are interested in participating in this research project, please contact the study research assistant Laura Jordan on [email protected] and she will be able to provide more detailed information about the study and organise enrolment.