Our Community Research Hub aims to connect researchers with our kidney community so we can achieve better outcomes in research.
Kidney Health Australia strives to bring the kidney community's voice to research in a more coordinated way to translate community needs into research priorities.
Kidney Health Australia has created a Community Research Hub to reflect voices of a kidney community. We aim to publish research factsheets, establish kidney research register, provide training to people living with kidney disease and their carers, and create database that can match kidney community needs to the research.
If you want to participate in kidney research, please scroll down to the listings at the bottom of the page.
Kidney Research OpportunitiesIf you are interested in finding out more about what clinical trials are and how they are conducted click the button below
About clinical trialsWe are conducting a vital research study to understand patient experiences, preference of treatment and needs in living with kidney cancer to potentially transforming kidney cancer care, ensuring future generations of kidney patients benefit from the advancements made possible by this study.
Learn MoreHere at the University of the Sunshine Coast, we are currently conducting a clinical trial that could really benefit some of your members. This trial will evaluate the safety and efficacy of an investigational treatment for hypertension in participants with Chronic Kidney Disease Stage 3b.
Learn MorePaediatric medical specialists including nephrologists can now order funded genomic tests for children with certain clinical presentations. This change aims to help more families receive timely, accurate diagnoses more quickly as they can access testing without having to have an appointment with a clinical genetics service first. My PhD is finding out about the support families need when genomic testing is delivered by paediatric specialists like nephrologists. We want to develop ways of measuring this so health services can know if they are doing a good job. This work will ultimately help health systems enhance the care families receive when genomic testing is indicated.
Learn MoreWe are conducting a study to understand the factors that influence users’ preferences for various designs of adaptive features in mHealth applications, particularly for people managing chronic conditions. The goal is to explore what aspects of adaptive user interfaces are most important for users.
Learn MorePalliative Care Australia (PCA) are working on the “Shaping the Future of Paediatric Palliative Care" Project. This important project is funded by the Australian Government under the Primary Health Care Quality and Coordination Program – National Palliative Care Program. One part of the project is to develop a Transition Pathway. The Transition Pathway will focus on the needs of young people with life limiting conditions as they move from a child centred health system to an adult health care system. Now, this is where you come in! PCA wants to hear from young people like you to help design a Transition Pathway. The goal is to make sure the move to adult care is less stressful and more suited to your needs. Your input can make a big difference for others who will go through this process in the future. There are three ways you can get involved: small group discussions, individual meetings or working groups. These opportunities will start from January 2025.
Learn MoreI am a researcher at CSIRO, where we will explore new research areas in chronic kidney disease (CKD) across various stages of its progression. As both a researcher and a Stage 4 CKD patient, I have a strong understanding of the disease and the challenges patients face. I am particularly interested in identifying key "pain points" that patients encounter along their journey to end-stage kidney disease (ESKD). We believe that patient insights should guide our research, ensuring we focus on the areas that matter most to people with CKD. To achieve this, I am looking to speak with at least 10 patients willing to openly discuss their experiences and the biggest challenges they face. These conversations will help shape future CSIRO research projects aimed at addressing these issues. Our team has developed a set of open-ended, unbiased questions to allow patients to steer the discussion based on what is most relevant to them. No ethics approvals are required, as this is not a formal study—no data will be published, and no personal details will be recorded. Would you like to be involved, and would you be willing to share your experiences? I will then arrange a phone call at a convenient time once I have your contact information (email). I appreciate any support you can provide. CSIRO is committed to taking a patient-centric approach to shaping our research direction.
Learn MoreThis 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
Learn MoreWe 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. Who can participate? (A) are currently receiving dialysis (haemodialysis or peritoneal dialysis) (B) have chronic kidney disease but are not receiving dialysis and don’t have a transplant * you must also be over 18, speak English, and can complete online surveys. What will I need to do if I choose to help? You will be asked to complete an online questionnaire including some brief questions about yourself and questions about your mental health, ability to participate in meaningful activities, perceived kidney function, family support, and thinking and memory abilities (15 minutes to complete). You will be asked some questions (2 minutes to complete) in a weeks time, and then again in 12 months time (15 minutes to complete). What will happen to my information? Your personal information is encrypted in the University of Queensland. At the end of the survey, your information will be de-identified, then analysed and published internationally. You may choose to receive the results of the publication by selecting 'yes' to this response during the survey. Ethics is approved by the University of Sydney and the University of Queensland. How do I get involved? 1. Click this survey link for more information and to view the online consent form: https://redcap.sydney.edu.au/surveys/?s=P7YP73FKTDFFN7AR Please do not hesitate to reach out to us for more information should you require it. We greatly appreciate your help, to allow us to help you live your life better with kidney disease.
Learn MoreWork 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. We are keen to hear from people who have competed in any sport at any level and are keen to share their wisdom !
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