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

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.

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.

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.