Thursday, January 21, 2021

Engaging Young People and Families in Research - Workshop 15 October 2016

                                         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


ClinTrial Refer BT4K App - IS HERE!

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.

Capture App screenshot


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.

 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..

Clinical trials website aims to boost participation

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:

Medikidz Explain Clinical Trials!

Explaining Clinical Trials to kids the fun way!

Medikidz is a children’s medical education organisation that works closely with healthcare professionals, families, children and patients to produce unique learning materials in an interactive, powerfully-visual comic book format, thereby helping to educate children about their health as well as the health of those around them. Over 3,500,000 Medikidz comic books have been distributed globally, involving over 400 leading specialist physician peer reviewers and 100 endorsing partners worldwide. The Medikidz mission is to create a global community of young people that is informed, empowered and health-aware.

The Medikidz comics have dozens of adventures, including ones about diabetes, cancer, eczema, and ADHD. And now there’s a comic book about volunteering for a clinical trial - called “Medikidz Explain Clinical Trials.”

The creators of these stories work hard to get the science right. Physicians write the basic stories, which comics writers and illustrators then elaborate and execute. The science goes through a peer review process, to verify the information that comes with the jokes and the action.

More information is available on their website

Clinical Trial Data Management System (CTDMS)

WebSpirit : An affordable Clinical Trial Data Management System (CTDMS)

Researchers currently planning a grant submission with a budgeted CTDMS components are invited to contact the Paediatric Trials Network Australia (PTNA) to discuss the possibility of using WebSpirit.

The PTNA’s WebSpirit data management system was funded through Therapeutic Innovations Australia to provide an affordable, regulatory compliant option for data management to Australian peadiatric clinical trial teams running investigator initiated clinical trials. WebSpirit is web-based and provides convenient but secure access for clinical trial data entry, management, reporting and export for analysis. Investigators from PTNA member institutions are able to utilise the system via a per project fee for use that is affordable comparative to other regulatory compliant data management systems. Investigators from non-PTNA member institutions can utilise the system via higher per project fees that remain affordable comparative to other systems. Network member institutions and researchers are committed to promotion of high quality and efficient multi-centre collaborative clinical trials and optimising effective delivery of health care by influencing policies, procedures and translation of research into practice.

Please contact Michael Emamooden for further information at This email address is being protected from spambots. You need JavaScript enabled to view it. or +61 2 9845 1329