Authors
Naomi Rafael (BioGrid Australia), Clare Scott (Walter and Eliza Hall Institute of Medical Research), Maggie Moore (BioGrid Australia), Jana Graenz (BioGrid Australia), Cynthia Pollak (H.E.A.R.D. Support Group), and Marienne Hibbert (Melbourne Health, VPAC, University of Melbourne)
Abstract
The study of rare tumours, similarly to other rare diseases, has been hindered by small numbers of cases available for research. Backed by a Victorian Cancer Agency (VCA) Consumer Grant, BioGrid Australia has developed a website dedicated to rare tumour research serving consumers, researchers and clinicians alike: the CART-wheel database. The vision is to attract international participation to aggregate as high numbers as possible of real cases of rare tumour types.
The website offers clinically vetted information about research into rare tumours and a support forum for patients. It also hosts a questionnaire to collect data about the patients’ clinical episodes, tissue samples and background information. The patient chooses whether to give permission for clinicians/researchers to contact them in case their tumour is of interest for a lab-based study or a clinical trial.
Participating in the questionnaire enables the patient to view reports based on the aggregated data from within the CART-wheel database. Interested researchers can apply to BioGrid for permission to search the database for potential subjects and to contact relevant patients (if they have consented) for participation in an ethically approved study
About the speaker
Naomi Rafael is the Technology and Systems Manager of BioGrid Australia. She has a Bachelor of Science in Nursing, Graduate Diploma in Computing and is currently studying Masters of Engineering in Distributed Computing at the University of Melbourne. She began her IT career in1988 working for various government and commercial organisations. She joined BioGrid Australia in October, 2004. Her role encompasses the management of system architecture, database administration, data integration, software engineering, metadata management, data analysis, hardware specification and other technological areas utilised by BioGrid.