Time & date: Saturday 15th October 2016, 9.30 am to 4.30 pm
Venue: Mercure Hotel, Sydney
Location: 818 - 820 George Street, Sydney NSW 2000, Australia
Cost: Free registration (inclusive of catering)
This national workshop brings together young people, families, communities, and health professionals to learn and discuss how to engage young people with chronic conditions and their families in research. At this event, you will hear from Sally Crowe who is a world-recognised expert in patient engagement, a member of the British Medical Journal’s Patient Panel and former Co-Chair of the UK-based James Lind Alliance (JLA), which facilitates research priority setting partnerships globally. This workshop is hosted by BT4K, an initiative funded by the NSW Health (Office of Health and Medical Research), aimed to increase the number, relevance and quality of clinical trials in young people.
Who can attend? Young people (aged 11-18 years) with a chronic condition, adult family members (of children and young people aged 0-18 years), caregivers, patient advocates, healthcare providers, policy makers, and researchers.
When? 9:30 am – 4:30 pm Saturday 15th October 2016
Where? Mercure Hotel, Sydney NSW, Australia
Registration: Registration is free and limited to 80 participants. Please register your interest here http://www.thekaleidoscopeproject.com.au/national-forum-2016/and a confirmation email will be sent to you within three days of submission.
If you have any questions, email Dr Pamela Lopez-Vargas at This email address is being protected from spambots. You need JavaScript enabled to view it.
The Kaleidoscope Project
Supported by NSW Ministry of Health
Better Treatment 4 Kids Network
The Children’s Hospital at Westmead
The University of Sydney
http://www.thekaleidoscopeproject.com.au/national-forum-2016/
Finding available clinical trials has never been easier!
The Better Treatments 4 Kids Network (BT4K) has licensed an iOS and Android mobile device app, which will allow real time searching of available paediatric clinical trials in NSW, facilitating clinician and consumer access to currently recruiting trials which is envisaged to boost trial participation by increasing referrals.
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This is an initiative of BT4K to support evidence-based health care in NSW and will be managed by BT4K Network Coordinator at no cost to the researchers and available for free download by all users.
One of the challenges of recruiting participants is lack of awareness about clinical trials (by both amongst health care professionals and patients), their availability and how to participate. BT4K is calling on researchers conducting clinical trials to support this initiative by providing activity data of paediatric clinical trials conducted at their premises.
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For information about the app and how to get your trials listed on ClinTrial Refer BT4K app site please contact: This email address is being protected from spambots. You need JavaScript enabled to view it..
Australian-first website to connect more patients with clinical trials
Australia’s first national website collating information about clinical trials aims to boost the number of patients who sign up as trial participants, Federal Health Minister Sussan Ley says.
The website, http://www.AustralianClinicalTrials.gov.au, would be a “one-stop shop”, giving information about how clinical trials work as well as allowing patients to search for relevant trials in which they might be able to take part.
Ms Ley said the just under half of all Phase III clinical trials in Australia didn’t meet their patient recruitment targets ‒ a factor that contributed to a 7% decline in the number of trials conducted in 2013 compared to the previous year.
The website was launched as the BMJ announced that from 1 July, it would extend its requirement that study authors share anonymised patient data for trials, so that the requirement applied to all submitted clinical trials, not just those testing drugs or devices.
The WHO also recently released a statement on public disclosure of clinical trial results, defining reporting timeframes, calling for results-reporting of older but still unpublished trials, and outlining steps to improve linkages between clinical trial registry entries and their published results.
Media release availabe here:
