An Exploratory Case Study of Australian Adults with Inflammatory Bowel Disease and Their Perception and Experience of Wellbeing: A Transpersonal Perspective
A Liverpool John Moores University and Alef Trust Masters research case study seeking 8 participants.
To date, the investigations into IBD have been predominantly clinical. The absence of investigation into the more experiential aspects of IBD has left a gap in understanding of its more humanistic dimensions and their potential to integrate with and enhance clinical research.
If you are an Australian resident, 18 years of age or older, with a current diagnosis of active or in remission IBD and are currently under the care of a gastroenterologist, please email [email protected] to find out more about participating in this exploratory case study.
Sleep, fatigue and mental health in IBD survey
Researchers from Flinders Medical Centre and Flinders University are seeking your support with the Sleep, fatigue and mental health in IBD survey.
Help them to improve the understanding of fatigue, mental health and sleep in people with IBD.
If you are eighteen years or older and have a diagnosis of inflammatory bowel disease, we invite you to complete an anonymous online survey using the secure link below:
Paediatric IBD management system survey
Crohn’s Colitis Cure (CCCure) want to know what children with IBD and parents/carers think should be included in a new IBD management system being developed for healthcare staff and patients.
The survey only takes around 3 minutes to complete! Click the button below to get started.
New study for people with IBD and symptoms of anxiety and depression
Do you have IBD (Crohn’s disease, ulcerative colitis, or indeterminate colitis)?
Do you experience symptoms of anxiety and/or depression?
Researchers from Deakin University are conducting a study which aims to test a novel psychological intervention designed for people living with IBD and symptoms of anxiety/depression.
What Will it Involve?
The study is designed to be delivered fully online. The program utilizes a psychological approach called Acceptance Commitment Therapy, and will involve up to 1 hour of online work per week for 8 weeks. Four out of eight sessions will be facilitated by a psychologist and the remaining four will be self-directed using online resources. We will also ask you to complete an online questionnaire before the intervention, immediately after the intervention, and 3 months after the intervention.
Who Can Participate?
If you have IBD (Crohn’s disease, ulcerative colitis or indeterminate colitis) and can provide a document confirming your diagnosis, you may be eligible to participate. However, please note the study is only addressed to people with mild to moderate levels of anxiety and /or depression and we will undertake a brief screening of these.
To express interest or if you have any further questions about this research, please contact us via [email protected] or scan the QR code to the right for more information.
This study has received Deakin University ethics approval (reference number: 2021-263).
Attitudes to COVID-19 vaccination in IBD
The Inflammatory Bowel Diseases team at Royal Melbourne Hospital invite you to complete a survey to gather perspectives and attitudes towards COVID-19 vaccination in individuals with IBD. This will help gastroenterologists and IBD care teams address concerns and improve communication.
Completion of this survey will take around 5 minutes across 4 pages. This is a confidential, anonymous survey.
You may open the survey in your web browser by clicking the link below:
Crohn’s disease monitoring study
The purpose of this study is to better understand the monitoring experiences, enablers and barriers, benefits and drawbacks, and preferences in adults with Crohn’s Disease. There is little information about patient perspectives and beliefs regarding disease monitoring and gathering this information can help to guide health care.
We will gather information about your experiences and preferences during Crohn’s disease monitoring using online focus groups. Focus groups allow for 6-8 people to come together to share their knowledge and expertise in a confidential group format. The purpose of the focus groups is to better understand the monitoring experiences, enablers and barriers, benefits and drawbacks, and preferences in individuals with CD. Individuals within the focus groups will also be asked about the strategies they suggest to enhance the monitoring experience for persons living with CD.
Who can participate? You can help us if you:
- Are diagnosed with Crohn’s Disease;
- Are 18 years of age or older;
- Live in Canada, United States, Australia, United Kingdom [England, Scotland, Wales]; speak and understand English fluently;
- Have experienced at least 2 types of disease monitoring [endoscopy (ex. colonoscopy), magnetic resonance enterography (MRE), CT scan, intestinal ultrasound, blood tests, or stool tests].
If you are interested in participating in the focus group, please contact the Research Coordinator Toyin Ogunyannwo at [email protected]
Tell us the most respectful way to refer to your health condition or disability.
Should you be addressed as a person/patient with Crohn’s disease or a Crohn’s diseased person/patient? Do you think this varies depending on who is addressing you: ie friend, professional, media? Have your say!
Researchers at Charles Sturt University and Monash University would like your help. Click on the link to complete a 10-15 minute survey:
Home parenteral nutrition: Psychological factors and wellbeing, quality of life and line care
Researchers at Cardiff University, Wales are examining psychological factors that may be associated with wellbeing, quality of life and line care amongst people who receive home parenteral nutrition (HPN). It is hoped that this study will help us understand more about the impact of these psychological factors, and in doing so, better understand what kind of support might benefit the mental wellbeing of people receiving HPN.
Who can participate? We are inviting individuals who are 18 years or older and currently on home parenteral nutrition (HPN) to participate in an international, online survey.
What will it involve? If you would like to take part, this will involve answering some questions that ask about your thoughts, feelings, behaviours and experiences. There will also be some questions asking you about your line care and whether you have had any line infections. The survey should take no longer than approximately 20-25 minutes.
The researchers would like to thank you in advance for your participation. Your responses are highly valued and will help us to understand more about what contributes to people’s wellbeing, quality of life and line care behaviours when receiving HPN.
To complete the survey, please visit: https://cardiffunipsych.eu.qualtrics.com/jfe/form/SV_5tC91fS6M2r35rg.
Please note that no personal identifiable information will be collected, and therefore responses are anonymous. All responses will be reported as part of a total data set, not individually.
Perianal Crohn’s disease research study
The Gastroenterology teams at St Vincent’s Hospital Melbourne and Liverpool Hospital Sydney, invite you to participate in an anonymous online survey to improve the way specialist healthcare teams care and support patients with Crohn’s disease affecting the anus area, known as perianal Crohn’s disease.
To do this, we need your help in understanding how your disease impacts your life, your experience with specialist healthcare teams, and ways we can improve the care and support delivered to you. As well as this, we are interested in designing clinical trials to improve treatments and care for all patients with perianal Crohn’s disease that are focused on things which are important to you.
If you are aged 18 years or older and have a diagnosis of perianal Crohn’s disease, we invite you to please complete an anonymous online survey using the secure link below. The survey will take around 10 to 15 minutes to complete, with answers securely recorded. The survey will be completely anonymous, so no personal identifiable information will be requested or collected.
You may open the survey in your web browser by clicking the link below. If the link does not work, try copying the link into your web browser:
Your participation in this survey will help us to improve the way we deliver care and allow us to design clinical trials with a focus on what is important to you. We thank you for your involvement.
Immune response to COVID-19 vaccination in immunocompromised hosts (IRVAX) study
The Royal Melbourne Hospital in collaboration with the Doherty Institute are examining the immune response to individuals with inflammatory bowel disease to COVID-19 vaccination. This is in order to determine whether individuals who are taking immunosuppressive medications get the same level of protection from the vaccine, and whether this is sustained, compared to individuals who are not taking medication.
This involves a series of 5 blood tests, the first of which occurs at Royal Melbourne Hospital at any point in time prior to your first vaccine dose. Blood tests will occur at different time points after vaccination.
To be eligible the study, you must be:
- Aged 16 years and over
- Have a confirmed diagnosis of inflammatory bowel disease
- Have not yet received your first COVID-19 vaccination yet, but plan to
- Take medications to manage your IBD
To learn more about the study, please contact Dr Eva Zhang at [email protected].
The Pregnancy in Crohn’s and Colitis: Observations, Levels and Outcomes Extension (PICCOLO-X) study
Researchers at Monash Health Melbourne and St Vincent’s Hospital Melbourne are looking for women with Inflammatory bowel disease who are pregnant, or who are planning pregnancy in the next 12 months, to participate in their study, PICCOLO-X.
The aim of this study is to develop a sophisticated, integrated method for monitoring and managing IBD activity in pregnancy to improve pregnancy outcomes. We are evaluating how levels of vedolizumab, ustekinumab and thiopurines (azathioprine, mercaptopurine) change in pregnancy, their degree of transfer to the baby, their clearance from the baby and if they have any effects of the immune system, liver function and other blood parameters of the baby. This study will help pregnant women with IBD and their doctors make informed decisions about their medical treatment in pregnancy, with a better understanding of the overall effects of IBD itself, and the medications taken for it, on pregnancy outcomes and the baby.
Involvement in this study will require review in our dedicated and highly specialised pregnancy and IBD clinics, conducted at Monash Medical Centre Clayton or St Vincent’s hospital Melbourne, either via telehealth or in person. These appointments will take place prior to you falling pregnant if possible, in each trimester, and after delivery. You will also be asked to undertake online or letter-based questionnaires regarding you baby’s health and development. You may undergo additional blood tests, including for drug levels, stool tests and intestinal ultrasounds, if you choose to as part of the study.
To be eligible the study, you must be:
- Aged 18 years and over
- Have a confirmed diagnosis of Inflammatory bowel disease, with a treating gastroenterologist who will be able to refer you to the study and collaborate in your care throughout pregnancy.
- Be pregnant or have an active desire to become pregnant in the next 12 months.
- Be willing and able to consent to the inventions described.
To learn more about the study, please contact Dr Ralley Prentice at [email protected]. You will need a referral from a gastroenterologist In order to be recruited to the study, so please contact and discuss with your usual treating team prior to making contact with our service.
Participate in the Chronic Conditions Course
Researchers at the Macquarie University eCentreClinic are seeking adults with chronic health conditions to participate in the Chronic Conditions Course.
The course is a free, online program that is designed to provide information and skills to help people manage the emotional impact of chronic health conditions on their day-to-day life. The course duration is 8 weeks, and participants are supported by registered psychologists as they work through.
- Participants can apply to take part in the course via the eCentreClinic Website.
- Course psychologists will contact participants to complete a telephone assessment and confirm their eligibility
- Eligible participants will enrol in the 8-week course
- Participants will complete questionnaires to help us evaluate the course. Questionnaires are completed before and after the course, and also three follow-up time periods: 3 months, 12 months and 24 months.
The course is suitable for:
- Adults aged 18 and older.
- With a chronic health condition that is impacting their life and emotional wellbeing.
- Who have at least 4 hours per week to spend working on the Course and practicing the skills taught during the Course.
Help us reach further in Crohn’s disease
A clinical research study assessing the safety and effectiveness of an investigational drug for people with moderately to severely active Crohn’s disease (CD) is now enrolling.
If you are interested in taking part in the GALAXI Study, we are looking for men and women who:
- Are 18 years of age or older
- Have had moderately to severely active CD at least 3 months
- Have a diagnosis of colitis, ileitis or ileocolitis
- Have not responded to previous treatment for their condition
They are other criteria that you will need to meet to qualify, which the study team will discuss with you.
For further information about the GALAXI study contact: galaxistudy.com
Alfred Hospital, Julie Hogg, [email protected]
Austin Hospital, Kathryn Burrell, [email protected]
Monash Health, Thomas McLeod, [email protected]
Royal Melbourne Hospital, Irene Bell, [email protected]
Royal Perth Hospital, Veronique Isley, Stephanie Chislett, [email protected]
Contacting us does not mean that you will be obligated to join the study or that you will be eligible to participate.
IBD MAID – a modified anti-inflammatory diet trial
Researchers at the Royal Brisbane and Women’s Hospital (RBWH) are seeking adults with mild to moderately active Inflammatory Bowel Disease (IBD) to participate in an 8 week dietary intervention.
The purpose of this research is to determine if following an anti-inflammatory diet prescription reduces disease activity, improves quality of life and influences gut microbiota diversity.
- Complete one 20 minute telehealth (requires access to either a PC, Laptop, Mac, tablet or smart phone) or face to face appointments for assessment (questionnaires, diet intake interview, blood tests).
- Complete two to four 15 to 30 minute telehealth or face to face follow up appointments.
- Follow a dietary prescription for a minimum of 8 weeks (some meals or resource and some ingredients provided).
- Provide up to 4 stool samples (home collection kit provided).
- Complete a weekly diet checklist.
Are you eligible?
- 18 years or older
- Diagnosed with mild to moderate IBD (Crohn’s disease or UC)
- Not currently smoking
- Live within ~20km radius of the RBWH
If you are interested to participate in the study please contact dietitian and study coordinator Abigail via email [email protected] or phone 0466 079 734.
Adults with Ulcerative Colitis (USC Clinical Trials, Sunshine Coast QLD)
Adults between the ages of 18 and 65 with mild to moderate Ulcerative Colitis may qualify for a clinical trial enrolling now. Participants may receive compensation for time and travel.
For more information & to participate, click here.
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.
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.
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].
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.