Community Research Hub

This study intends to document the dietary patterns of people doing PD. Participation invovles completion of a food frequency questionaire at baseline and 12 months later. People will be asked to consent to linking their dietary data to their information in ANZDATA. Consumers will be reimbursed $50 each time they complete the food questionaire (takes around 10-15 minutes). This can be completed online or via hard copy

We are reaching out to people with lived experience of chronic kidney disease (CKD) and those on dialysis to undertake a survey to help validate a new measure of life participation. What is Life participation and why is it important? It is a term used to describe how well people with kidney disease can live their life and do activities that are important to them. We don’t have a way to measure this yet. Being able to measure your life participation means that we can better track how to improve your life both in clinical trials and at clinic reviews as well and change the focus from surviving to thriving with kidney disease.

Work by our research team has found that people who have had a kidney transplant often struggle to start or get back to being active. We want to know more about what may help or hinder this. This project is exploring the motivation and inspiration for commencement of exercise after kidney transplantation and to understand the barriers and enablers to exercise. People who have had a kidney / kidney pancreas transplant, are aged 18+, can converse in English and consent to the audio recording of an interview with a member of the research team are eligible.

First-in-Human safety and tolerability study in adult participants with confirmed PKD1 mutation-associated ADPKD. The anticipated number of participants across 3 Part B (SAD – ADPKD) cohorts is approximately 18 participants. On Day 1, each participant will receive PYC-003 as a single IV infusion.

This project aims to understand the relationship between emotional wellbeing, social isolation, loneliness, and chronic disease. This is a significant gap in current knowledge, due to a lack of representation of people with chronic disease in previous research. This study is the second in a series of three studies, with the goal of developing interventions to reduce loneliness and social isolation in people living with chronic diseases

This study explores how kidney transplantation affects the quality of life of highly sensitised patients—those with antibodies that make finding a compatible donor more difficult. We will use surveys and interviews to understand how these patients’ expectations compare with their lived experiences after transplant. To better understand what makes their experience unique, we will also include a small comparison group of non-sensitised transplant recipients. The goal is to improve informed consent and post-transplant support for highly sensitised patients.

The M25-147 study is a Phase 2, Multicenter, Randomized, Double-blind, Placebo-controlled Study to Evaluate the Safety and Efficacy of ABBV-CLS-628 in Adult Subjects With Autosomal Dominant Polycystic Kidney Disease (ADPKD). ​​ABBV-CLS-628 is an investigational drug being developed for the treatment of ADPKD. Participants are placed in 1 of 4 groups, called treatment arms. Each group receives a different treatment. There is a 1 in 4 chance that participants will be assigned to placebo. Around 240 adult participants with ADPKD will be enrolled at approximately 100 sites worldwide (of which approximately 5 sites in Australia). ​Participants will receive IntraVenous ABBV-CLS-628 or placebo every 4 weeks for 92 weeks. Participants will be followed for up to 15 weeks.

Endometriosis has devastating impacts on sufferers, their community and the economy. It is important that endometriosis is recognised as more than just a gynaecological disorder. There is growing evidence to support that endometriosis increases a person’s risk of cardiometabolic disease (a group of common conditions e.g., hypertension, heart disease, stroke and kidney disease). Explanations for this include chronic inflammation caused by endometriosis and/or common treatments for endometriosis (e.g., hormone therapies and hysterectomy). There is an urgent need for improved understanding of the burden and implications of cardiometabolic disease and endometriosis, particularly in young women.

This project is part of a PhD thesis. It aims to answer the following research question: What are the views, experiences, and practices of rheumatology and nephrology health practitioners of gout management in patients with gout and kidney failure initiated on dialysis? We will recruit rheumatologists and nephrologists/ renal nurse practitioners who are willing to participate, give informed consent and agree to be recorded in an interview.

We are currently conducting a market research project on the management of Chronic Kidney Disease (CKD) on behalf of a large pharmaceutical company. The purpose of this research is to better understand the lived experiences of people living with CKD. To carry out the final interviews of the research, we’d like to interview a few patient advocates who can provide us with rich insight into the patient experience. We want to have an in depth understanding of CKD in clinical practice.

We are currently conducting a study aimed at understanding the real-world experiences of young people living with chronic illness, and the parents or carers who support them. We are inviting: Young people aged 13–17 years living with a chronic illness Parents or carers of children and young people (up to 18 years) with a chronic illness We would be very grateful if your organisation could assist us by sharing information about the study through your newsletter, website, or other communications with your members.

This is a survey seeking consumer perspectives on the use of combination therapies for the management of CKD Dear Friends of the Kidney Disease Community, We are still looking for patients, and people with lived experience of kidney disease to complete our survey about combination therapies in the treatment of kidney disease. This will help design our research into combination therapies for kidney disease. This survey is designed to understand how people living with kidney disease feel about these newer treatment options.

We are conducting a national survey study titled “Understanding vaccine practices in dialysis: A survey for consumers” to explore the attitudes, beliefs, and understanding of vaccinations among patients undergoing dialysis. This is for consumers (people receiving dialysis) and their carers to help better understand how consumers think about vaccinations and any concerns or challenges they have faced. We have attached an information sheet and a flyer with further details about the study.

We are conducting an anonymous online survey to better understand the lived experiences, support needs, and treatment barriers faced by young adults (aged 18–29) living with chronic physical health conditions in Australia. Participants complete a single 30-minute anonymous online survey about health experiences, wellbeing, and access to psychological care. Findings will directly inform the development of a tailored, transdiagnostic online psychological program to improve access to evidence-based care for young adults with various chronic conditions.

We are conducting an online survey with people affected by frailty (including consumers and caregivers), health professionals, peak body representatives and anyone with an interest in frailty or healthy ageing education. The survey is anticipated to take ~30 minutes to complete for consumers and caregivers and ~15 minutes for other participants, as the survey for consumers/caregivers has additional questions.

Monash University researchers are seeking to explore what people know about the guidelines their health professionals use to guide their health care. The primary aim is to capture the views of Australian community members and clinicians about the currency of guidelines, and their views about living guidelines. We are inviting anyone who has accessed the Australian health care system (by visiting their doctor or any other health professional – themselves or with a loved one) to share their views in our 5-minute online survey.