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April 2025<\/td><\/tr>
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Improving child health through research<\/em>
PTNA is proud to announce its 2016 membership!<\/strong><\/a>Full member of the Australian Therapeutic Pipeline<\/strong><\/td><\/tr>
<\/td><\/tr>
<\/td><\/tr>
Chair’s Message<\/strong>

Dear members and friends of PTNA
\u00a0
Things are going well at PTNA. Our funding has been extended and Rebecca, our new EO, is now well established. There is also ongoing interest in supporting paediatric trials at a government level. Although the timing and detail of this support are yet to be clarified, PTNA continues to advocate on your behalf.\u00a0

We are launching several new exciting initiatives. Webspirit is going strong and a new version was successfully rolled out in May. We are also excited to welcome John Hunter Children’s Hospital as our newest member. \u00a0We’ll include more about JHCH in our September newsletter. \u00a0

This edition of the PTNA newsletter highlights some of our recent initiatives including our next scientific meeting, to which you are all welcome. Please mark\u00a014 October 2016<\/strong>\u00a0in your diary, we look forward to seeing you there. \u00a0

Enjoy reading the PTNA newsletter and let us know if you have any feedback.\u00a0

Best wishes,
Prof. Andrew Davidson<\/strong>
Chair, PTNAPTNA Peer ReviewHow can PTNA assist?<\/em><\/strong>PTNA offers an impartial and independent review of your new trial concept before you embark on writing your protocol and seeking funding. It is a confidential, fair and timely consideration of your concept.\u00a0 You will be provided with recommendations on how to develop your idea, tackle your challenges, find additional expertise and improve the quality of your trial.Have\u00a0your trial reviewed by your peers<\/em><\/strong>
The NHMRC, Australian Research Council and Universities Australia’s\u00a0Australian Code For The Responsible Conduct Of Research<\/a><\/strong>\u00a0<\/em>encourages peer review prior to developing a study. Early peer review assists when you:
– submit a grant application;- put together your research team;- formulate your question and endpoints;- design your methodology and data collection;- determine your budget; and ultimately- submit your publications.
Template, guidelines and more information are\u00a0coming:\u00a0ptna.com.au<\/a>\/news\u00a0 \u00a0 \u00a0
\u00a0\u00a0\u00a0<\/strong>

PTNA Trials Day – call for abstracts<\/strong>PTNA invites you to submit an oral presentation abstract for its annual\u00a0PTNA\u00a0Trials Day on 14 October 2016.<\/strong>The Trials Day will be held in Sydney at the Mercure Hotel right in the heart of the city.

This year, PTNA brings you:\u00a0Tips from the experts.<\/strong><\/u><\/a>In the morning you will hear from grant reviewers, editors in chief and other experienced researchers present topics such as:grant writing;publications;working with industry;designing your trial;improving recruitment; andfinding other funding sources. \u00a0The afternoon will be devoted to new trial concepts and collaborations. This is your opportunity to present your new trial concept or to contribute feedback to someone else\u2019s.

PTNA fosters a\u00a0respectful and collegiate\u00a0Trials Day environment in which we can all learn from one another.

To share your trial concept or your new trial with the paediatric trials community\u00a0click here to submit an oral presentation abstract.\u00a0<\/a>\u00a0<\/strong>Submissions close\u00a02 September 2016.<\/strong>Presentation places are limited so don\u2019t miss out.\u00a0Registration fees for abstract presenters will be complementary.\u00a0

Registration for the PTNA Trials Day opens in July and will be available on the PTNA website soon:\u00a0www.ptna.com.au<\/a><\/strong>

WebSpirit User Survey<\/strong>All WebSpirit users will be invited to participate in the annual satisfaction survey in
August 2016.<\/strong>

Please use this opportunity to provide valued feedback on your experiences with WebSpirit.\u00a0 Your feedback will be carefully considered and may lead to future system improvements.WEBSPIRIT – SPOTLIGHT ON YOUR STUDIES<\/strong>.Metastatic Colorectal Cancer Database:<\/strong>\u00a0A prospective observational cohort study examining clinical and molecular biomarkers.
Why did you decide to undertake the CRC Study?<\/em>
Metastatic colorectal cancer is a common cause of morbidity and mortality in Australia and around the world. However with recent advances in treatment with additional chemotherapy and biologic agents the outlook for patients has improved considerably. Recent research has focused on tailoring treatment to patient\u2019s individual molecular make-up and alterations.

What did the CRC Study aim to do?<\/em>
The aim of the CRC study is to establish a prospective database of patients with metastatic colorectal cancer.

How do you use WebSpirit?<\/em>
Tissue samples are collected and tested for known and possible biomarkers and the frequency of molecular alterations. The data is recorded in WebSpirit.\u00a0 In combination with clinical data, this information will assist in refining therapeutic strategies and ultimately improve patient\u2019s outcomes.

What challenges did you face?<\/em>
In order to meet the aim, data for a substantial number of patients from multiple sites needs to be captured. Funding is limited, a large amount of data is required\u00a0from three sites across Queensland, at least 900 participants over 10 years are needed; and importantly there needs to be an easy way of reporting the data. There is no funding for on-site monitoring or centralised data entry.\u00a0

How did WebSpirit help you overcome the challenges?<\/em>
WebSpirit provides\u00a0the solution to the challenges.\u00a0 It can be used by each site with limited training, is cost effective, allows\u00a0centralised data review, provides\u00a0an audit trail to ensure adherence to ICH-GCP requirements and data can easily be exported.

To monitor trial progress, data needs\u00a0to be of high quality and easily accessible.

What are the benefits of WebSpirit for the CRC Study?<\/em>
WebSpirit was specifically developed to capture trial data for investigator-initiated trials from multiple sites. It easily accommodated our trial requirements.Michael, the PTNA Database Manager, continues to provide support and regulatory guidance, including training and controlled, secure access to the database.\u00a0The application and training are user friendly thereby\u00a0reducing the time and cost of customising\u00a0the database. WebSpirit allows data to be easily exported.

How is the CRC Study going now?<\/em>
The CRC Database began in July 2015. To date over 120 participants from three sites have been entered. An interim review of 88 participants was performed in August 2015.The\u00a0PTNA Capability Map<\/em>\u00a0goes LIVE!<\/strong>
The\u00a0PTNA Capability Map<\/em>\u00a0data collection has officially begun.
It is currently being rolled out at:\u00a0 Murdoch Childrens Research Institute, Royal Children\u2019s Hospital (Melbourne), Sydney Children Hospital Network including Randwick Children\u2019s Hospital and The Children\u2019s Hospital at Westmead, Children\u2019s Health Queensland, Telethon Kids Institute and Child and Adolescent Health Service (Princess Margaret Hospital).The PTNA Capability Map<\/em>\u00a0will facilitate collaboration by identifying the people and sites who are ready and able to conduct high quality paediatric research.
Please opt-in by including your details in the\u00a0PTNA Capability Map.\u00a0<\/em>The key contacts at the pilot sites are:Carolyn Stewart<\/strong>\u00a0\u2013 Murdoch Childrens Research Institute and Royal Children\u2019s HospitalPeng Tjun Choy<\/strong>\u00a0\u2013 Children\u2019s Health QueenslandNat Eiffler\u00a0<\/strong>\u2013 Telethon Kids InstituteAngela Fonceca<\/strong>\u00a0– Child and Adolescent Health Service (Princess Margaret Hospital for Children).<\/em>Or feel free to contact PTNA directly on\u00a0info@ptna.com.au<\/strong><\/a>\u00a0for more information.Consultations: Medical Research Future Fund Consultation
and<\/strong>
2016 National Translational Health Research Survey<\/strong>
\u00a0In advocating for paediatric clinical research, PTNA submitted its proposal for the Medical Research Future Fund (MRFF) through the Australian Medical Research and Innovation Strategy and Related Priorities Consultation and the third biennial 2016 National Translational Health Research Survey.\u00a0The proposal included a national approach to support paediatric clinical research to maximise opportunities for success.\u00a0 This includes a national child health body focused on clinical research, infrastructure funding, KPIs embedded into hospitals and health services, funding for concept development and extension studies.\u00a0The National Translational Health Research survey was undertaken by\u00a0Therapeutic Innovation Australia<\/a>\u00a0to inform the Commonwealth Review of Research Infrastructure. \u00a0PTNA\u2019s survey response emphasised the need for trials infrastructure, better awareness and interconnectivity between government-funded platforms; and building relationships with industry.

The Kaleidoscope Project<\/u>

NSW Better Treatment 4 Kids Network<\/strong>

<\/a>

PTNA is proud to support the Kaleidoscope project.\u00a0

NSW Better Treatment 4 Kids Network is committed to developing a research priority setting project for children and adolescents with chronic conditions. The project,\u00a0\u2018The Kaleidoscope Project’<\/a>,\u00a0will bring together patients, carers, clinicians and policy makers around Australia to identify and prioritise important research questions.\u00a0 This will help to ensure that those who fund health research are aware of what really matters to both patients and clinicians. The project involves focus group discussions with children and their parents\/caregivers, surveys and a one day workshop.
For further information about the project please visit the website:\u00a0www.thekaleidoscopeproject.com.au<\/a>.\u00a0 You and your study stakeholders (eg children, parents, carers) can also register to have a say about important research questions and priorities for children with chronic disease through the online survey.
\u00a0Not a member of PTNA Yet?<\/strong>
PTNA is an inclusive network of organisations that undertake high quality paediatric clinical trials.

Large site = $4,000 per annum. Small site = $1,000 per annum.Talk to us about the benefits of membership and being actively involved in the paediatric trials community:\u00a0info@ptna.com.au<\/a>Upcoming events<\/strong>


14-15 July \u2013 Society for Clinical Research Sites (Asia Pac) Summit (Melbourne)<\/a>
4-6 August 2016 – Sydney International Update on Advances in Perinatal Care\u00a0(Sydney<\/a>)
\u00a014 October – PTNA annual trials day (Sydney)<\/strong><\/a>\u00a0<\/strong>
24 November\u00a0 – Australian Clinical Trials Alliance Summit<\/a> <\/a>(Melbourne)<\/a>PTNA Steering Committee:<\/strong>NSWProf Chris CowellThe Children\u2019s Hospital at Westmead,\u00a0Sydney Children\u2019s Hospital Network, SydneyNSWProf Jonathan CraigThe Children\u2019s Hospital at Westmead,\u00a0Sydney Children\u2019s Hospital Network, SydneyNSWProf Ian WrightIllawarra Health and Medical Research Institute,\u00a0 The Wollongong Hospital, University of WollongongNSWDr Koert de WaalJohn Hunter Children’s Hospital, Hunter New England kids HealthSAProf Helen MarshallWomen’s and Children’s Hospital, AdelaideQLDProf Ross PinkertonChildren’s Health QueenslandQLDProf Peter SlyChildren\u2019s Health Queensland, The University of QueenslandVICProf Andrew Davidson
(Chair)Murdoch Childrens Research Institute, Royal Children\u2019s Hospital, MelbourneVICProf John CarlinMurdoch Childrens Research Institute, University of Melbourne, MelbourneWAProf Peter RichmondTelethon Kids Institute, Princess Margaret Hospital for Children, Perth<\/td><\/tr><\/tbody><\/table><\/figure>\n","protected":false},"excerpt":{"rendered":"

April 2025 Improving child health through researchPTNA is proud to announce its 2016 membership!Full member of the Australian Therapeutic Pipeline Chair’s Message Dear members and friends of PTNA\u00a0Things are going well at PTNA. Our funding has been extended and Rebecca, our new EO, is now well established. There is also ongoing interest in supporting paediatric trials … Read more<\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-144","page","type-page","status-publish"],"_links":{"self":[{"href":"https:\/\/ptna.com.au\/index.php\/wp-json\/wp\/v2\/pages\/144","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ptna.com.au\/index.php\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/ptna.com.au\/index.php\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/ptna.com.au\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/ptna.com.au\/index.php\/wp-json\/wp\/v2\/comments?post=144"}],"version-history":[{"count":0,"href":"https:\/\/ptna.com.au\/index.php\/wp-json\/wp\/v2\/pages\/144\/revisions"}],"wp:attachment":[{"href":"https:\/\/ptna.com.au\/index.php\/wp-json\/wp\/v2\/media?parent=144"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}