Who We Are?
ARRK or the Australasian Registry of Rare and Genetic Kidney Disease is composed of a website and database developed by clinicians and researchers that specialise in kidney disease and genetics.
The ARRK Working Group, has representation from across NSW, VIC, QLD and the ACT. The ARRK website and database will recruit patients with rare and genetic kidney disease from hospitals and clinics across Australia and New Zealand.
Patients will be recruited by their kidney doctor, given a Letter of Invitation, a Participant Information Sheet about this study and a Consent Form to sign. Following consent by the participant, information about the patient will be entered into a database by their local team.
This study has been approved by the Sydney Children’s Hospitals Network (SCHN) Ethics committee and Dr Hugh McCarthy is the Lead Principal Co-ordinating Investigator.
What do we do?
We know that people affected by rare disease have extra hurdles to get over in order to receive optimum care. They often have to wait a long time to get a diagnosis, there may be few expert centres, and treatment options are certainly limited. It is difficult to undertake research to study rare and genetic kidney diseases due to the low number of patients with a particular condition at each hospital. By building a cohort of patients with the same condition from throughout Australia and New Zealand, ARRK aims to enable research.
There is the possibility (likelihood!) of collaborating with international groups studying the same condition – the more patients, the more powerful the research. The ARRK platform allows researchers with a special interest to be able to work with these cohorts and together groups of experts can design useful research studies that might not be possible otherwise. This has worked well in other countries.
The ARRK website also attempts to provide a useful source of information written by experts for patients and their families about these conditions and some of the associated features such as genetics and treatments.
This work is done in partnership with patients and research that leads to better diagnosis or treatment will be published on the ARRK website.
The ARRK Working Group have coordinated the design and development of the website and the registry database and are now responsible for the day to day running. They include representatives from different states and territories, paediatric and adult nephrologists, clinical geneticists and will have consumer representation.
The ARRK Registry is a website and database being developed for patients with rare and genetic kidney disease. The website provides information written by specialists about general and more specific aspects of these conditions. In addition it provide links to further useful information for patients and their families.
The ARRK database provides a platform for researchers to study these specific diseases. Kidney health teams in local hospitals around the country will be able approach patients and ask for written consent to be included in the registry and then input their clinical data onto a secure database for analysis by the research teams. Where possible, the analysis (but not sensitive personal information) will be shared with international researchers to maximise the research opportunity.
Disease Specific Research Groups (DSRGs) are an important component of the research plan. They represent a collaborative of experts, including health professionals, consumer advocates and laboratory based researchers from throughout Australia and NZ who wish to study a particular disease. They will design the study and analyse the data that is collected through the ARRK database. Where possible they will work with international groups who are studying the same disease. They will also oversee the information provided on the website relating to their particular disease.
Dr Hugh McCarthy
ARRK Lead Principal
Sydney Children’s Hospital Network, NSW
Prof. Stephen Alexander
Children’s Hospital at Westmead and University of Sydney, NSW
Dr Andrew Mallett
Royal Brisbane and Women’s Hospital, QLD
Dr Cathy Quinlan
The Royal Children’s Hospital Melbourne, VIC
Dr Chirag Patel
Royal Brisbane and Women’s Hospital, QLD
Dr Jeffery Fletcher
Canberra Hospital, ACT
Dr Debbie Watson
ARRK Project Officer
University of Wollongong, NSW