BioGrid Australia to develop Australia and New Zealand's first Dermatology Register
BioGrid Australia has just been announced as the developer and host for Australia and New Zealand's first Dermatology Registry, a significant new initiative led by the Skin Health Institute, in collaboration with dermatologists across Australia. The Skin Health Institute is a not-for-profit centre of excellence in skin health that delivers highly specialised clinical treatment, education and research for skin health, skin diseases, skin cancers, and melanoma.
BioGrid currently hosts the Australasian Psoriasis Registry, which includes data from 109 clinics across Australia and New Zealand to record psoriasis patient data. The new Australasian Dermatology Registry will broaden the data collection scope to include other dermatological conditions, initially including Atopic Dermatitis (AD), Hidradenitis Suppurativa (HS) and Vitiligo, as well as the existing Psoriasis patient data.
Patient consent will be collected through a web application, and each patient will provide a range of data to help medical researchers investigate the effects of factors such as family history, demographics, comorbidities, and lifestyle on those skin conditions.
The registry is designed to improve the quality of care for people living with skin conditions by informing dermatologists of the efficacy and risks of current and emerging treatment, the risk factors for developing a skin condition, and the impact these conditions have on the quality of life of the patients
BioGrid will be providing a suite of support services for the registry, including the development of the registry, hosting and maintenance, data ingestion and reporting.
“We’re pleased to be working with BioGrid Australia on this ground-breaking initiative,” said David Malone, CEO of the Skin Health Institute. “There are significant benefits to clinicians and patients in bringing this information together in a single repository, and BioGrid’s significant experience with building and managing registries for the secure collection, storage and sharing of clinical data was key to their selection.”
"BioGrid's extensive experience supporting clinical researchers to collect and share data has been recognised by the awarding of this major piece of work," said Maureen Turner, CEO of BioGrid Australia. "This is a very important development for researchers in the dermatology field",
BioGrid’s experience setting up registries was crucial to their appointment
BioGrid has extensive experience with managing registry development projects, including CART-Wheel, which enables patients with rare cancer to record their own data to be used in research, and is hosting a range of cancer registries, including the Australian and New Zealand Thoracic Surgery Registry (for the ANZ Society of Cardiac and Thoracic Surgeons), Centre for the Analysis of Rare Tumours (Global Consumer Data Collection), Advanced Metastatic Colorectal Cancer (for Prince of Wales Hospital, Hong Kong) and HER2 Breast Cancer (for Canberra Hospital, ACT).
One of the key benefits of BioGrid’s service is the secure coding of patient data, ensuring that no identifying information is supplied to researchers using the data. BioGrid is the only collaboration network in Australia with the legal and ethical framework to enable the sharing of real-time health and medical data for research.
About BioGrid
BioGrid Australia Ltd is a not-for-profit company limited by guarantee. Its members are health services, universities and research institutes that utilise this trusted virtual real-time data-sharing platform to conduct collaborative multi-site research. BioGrid specialises in real-time linkage of hospital-based and managed clinical treatment outcomes, genomic, biospecimen, imaging and patient administration system data.
About Skin Health Institute
The Skin Health Institute (SHI) is a not-for-profit registered charity focusing on three core pillars: Treatment, Education and Research. It was founded in 1987 as a home for dermatology and it is the only organisation of its kind in Victoria. The Institute delivers education programs for dermatologists, registrars, and healthcare workers, as well as specialist training, to upskill GPs and medical students.
The Institute conducts clinical trials and research projects that are published and presented internationally which help shape clinical treatment and practice around the world and SHI is recognised globally for its contributions to medical research.