A series of resources and information have been provided below to provide further information about the ARRK Registry and to help with recruitment of patients.
- Background Information
- Recruitment statistics
- A Guide to Recruitment and Data Entry
- ARRK Participant Information Sheets and Consent Forms
- ARRK Protocol
- ARRK Presentations
What is the ARRK Registry?
The Australasian Registry of Rare and Genetic Kidney Disease (ARRK) allows information to be collected from patients with rare and genetic kidney conditions. This information is entered into a database run by the ARRK Working Group consisting of clinicians (nephrologists and geneticists). Disease Specific Research Groups (DSRGs) are an important part of this process.
DRSGs consist of experts for a specific disease subset and provide feedback and information on tests, diagnosis, treatments and research. DSRGs consist of expert clinicians, nephrologists, geneticists, patient representatives and medical researchers.
Benefits to participating in the ARRK Registry
There are several benefits to participating in the ARRK registry including;
You will have access to you own clinical information. You will be given a login and password to access this information.
You will have access to the Disease Specific Research Groups (DSRGs) that provide information for your particular kidney disease.
You will be helping other people with the same condition. Your data will help provide information about your specific disease and contribute to future understanding and research into you disease.
You will receive information about future research projects that you would like to participate in.
How to participate in the ARRK Registry
Ask your kidney doctor/consultant.
Carefully read the information about the ARRK registry provided to you in the Participant Information Sheets (PIS).
Then if you want to take part in the ARRK Registry, ask your doctor/consultant to go through the consent forms with you. Note participation in the registry is voluntary, and you must sign the consent form to participate in the registry. Please sign the consent form in front of your consultant who witnesses your signature.
More information about recruitment statistics will be added to the ARRK website in the near future.
A GUIDE TO RECRUITMENT AND DATA ENTRY
A Guide to Recruitment and Data Entry will be added to the ARRK website in the near future.
ARRK presentations are listed below;
Dr Debbie Watson, Prof Stephen Alexander, Dr Andrew Mallett, Dr Chirag Patel, Dr Cathy Quinlan, Dr Jeffery Flecther and Dr Hugh McCarthy – Bridging the divide: Utilising ARRK.org.au, A National Patient Registry To Promote Patient Advocacy for Rare Renal Diseases, Renal Genetics Symposium, Royal Children’s Hospital, Melbourne, VIC, Dec 2017.
Dr Hugh McCarthy – Rare Diseases Registry, BEAT Registries Symposium, SAHMRI, Adelaide, SA, April 2017.
Dr Hugh McCarthy – ARRK.org. au – a national registry to help define renal genotype. Renal Genetics Symposium, Royal Children’s Hospital, Nov 2016.
Dr Hugh McCarthy – Creating the ARK, Australian Registry of Rare Kidney Conditions, Renal Genetics Workshop, ANZSN, Canberra, 2015.
This page was last updated on 24th Oct, 2018.