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Sydney Children's Hospital, Cancer Research Centre

Kids with Cancer Foundation Australia gained the naming rights in 2011,
of the Kids Cancer Centre Research Facility 
at Sydney Children's Hospital, with an initial pledge of $1.5million.

 

The creation of this space is an important development in the integration of service delivery with research functions. The new Cancer Research Centre, under the leadership of Prof. Glenn Marshall, is one of three strategic capital priorities which currently exist on the Randwick Campus of the Sydney Children’s Hospitals Network.

As you are well aware through your ongoing and generous support, the Hospital’s Centre for Children’s Cancer and Blood Disorders is internationally renowned for its work in treating children with complex blood disorders and cancers. This new Centre — which has been in planning from some time — will dramatically improve our research endeavours.

The Centre will provide the best possible infrastructure for our researchers to congregate and focus on applying new therapeutic techniques and drug discovery at the clinical-face, where the majority of our work occurs. The Centre is ‘best-practice’ in terms of clinically-driven research, where a critical mass of professionals including senior clinicians, research scientists and data analysts can work together, in one space, to continue our goal of working towards 100% survival for children with cancer. Elizabeth Koff, Chief Executive, The Sydney Children's Hospitals Network (Randwick and Westmead) 


The $1.5million grant from Kids with Cancer Foundation (KWCF) to expand the Kids Cancer Centre (KCC) Research Facility has allowed:

  • The many children with cancer who come to us (Sydney Children's Hospital) for diagnosis and therapy to now receive better treatment and, particularly for high risk cancers, and have more treatment options available.
  • The KCC Clinical Trials team have expanded from 5 full time staff to 11 full time staff, including a Clinical Nurse Specialist who oversees early phase trials. With increased staff, KCC has opened over 25 trials for a broad range of disease groups and we are enrolling more patients on clinical trials since receiving the Kids with Cancer Foundation funding.
  • The activity on development of new and innovative investigator-led clinical trials has also increased
  • A Clinical Trials Project Officer has been appointed to liaise with the scientific and clinical staff of Kids Cancer Alliance member sites to develop new laboratory findings into early phase clinical trials.

The additional Kids with Cancer Foundation funds allowing the expansion of the facility have translated into the best possible treatments at the highest international standards available to our patients.

The quality of clinical trial management has been increased with the implementation of formal Standard Operating Proceedures (SOP) and the adoption of new electronic data management systems that meet Good Clinical Practice standards.

The funding from Kids with Cancer Foundation has facilitated Sydney Children's Kids Cancer Centre to become the National Coordinating Centre overseeing the Acute Lymphoblastic Leukaemia Study (Study 9). As the National Coordinating Centre, KCC is responsible for overall coordination and management of the trial in line with applicable local and international standards and guidelines. 

 

The grant from KWCF to expand the Facility has also allowed:

  • The Behavioural Sciences Unit (BSU) to demonstrate increased productivity and expansion over the past 12 months, in tandem with the refurbishment of its workplace and the provision of additional office space. Several key studies have been extended from single site studies to large, nation-wide projects, and are now considered benchmark studies leading Australian and international research in paediatric psycho-oncology.
  • New studies have also been developed and recognised with the awarding of competitive grant funding, allowing the BSU with the recent expansion to double the number of full time research staff to be employed this year.
  • Innovative new study methodologies have been supported by tailored facilities provided in the refurbishment, improving the novelty of research studies and the growth of clinical services provided to local and rural families affected by childhood cancer.

These three factors demonstrate measurable improvement in research outcomes and are a direct result of the infrastructure support that the Kids with Cancer Foundation has contributed to the Kids Cancer Centre and the Behavioural Sciences Unit.http://www.behaviouralsciencesunit.org/

 

The expansion of previous studies, meeting the needs of grandparents of children diagnosed with cancer. 

  • Grandparents of children with cancer are highly likely to experience distress during their grandchild's treatment. By examining the causes of their distress and determining specific information and support needs, the BSU has developed an evidence-based resource for grandparents when their grandchild is diagnosed with cancer.
  • The facility expansion has made it possible that this resource will soon be widely available in the community, resulting in real improvements for families. In March 2014, approximately 750 copies will be distributed across Australia via Redkite’s ‘Red Bags’, which are given to all families of children with cancer, meaning that all Australian grandparents will have access to free educational resources tailored to their needs. They will also have the opportunity to evaluate these resources to facilitate ongoing improvement and support for the next generation of families affected by childhood cancer.

This truly translational outcome is strongly related to the availability of sufficient work space to accommodate the size of the project team and the group cohesion encouraged by open plan office design only made possible by the KWCF funding of the facility.http://www.behaviouralsciencesunit.org/grandparents.html

The funds from KWCF have allowed the BSU’s bereavement study to expanded from two sites in 2012, to an international study involving 10 paediatric sites from across Australia and New Zealand. The study has been recognised nationally, with formal endorsement from the Australian New Zealand Children’s Haematology Oncology Group (ANZCHOG), as well as internationally, through presentations at international conferences in the USA and India.

  • Parents of children with cancer are highly likely to experience sleep deprivation when caring for their child admitted to the oncology ward during treatment. By examining the barriers to sleep, both emotional and physical, and determining specific information and support needs.  The BSU has been able to expand this study by developing an evidence-based intervention which has been awarded a new concept development grant (funded by ANZCHOG). The intervention will be novel, easily implemented on the ward, and the first of its kind world-wide. The deliverables of the grant will be achievable due to the additional space made available by the Kids with Cancer Foundation's funds for a new research assistant. http://www.behaviouralsciencesunit.org/sleep.html
  • The education project: A new three year program of work to further investigate the educational needs of children with cancer and other serious illnesses across Australia has been developed. This study will be undertaken by a PhD student, who will be supported by the successful establishment of a new PhD scholarship, co-funded by the Kids Cancer Centre and Ronald McDonald House Charities, which will commence in March 2014. The PhD program is highly translational, involving interviewing patients, parents and teachers to develop new resources to support the educational needs of children who are seriously ill.  Desk space provided by the expansion of the facility within the KCC to accommodate this new student will support the candidate’s progression and attract a higher calibre of applicants. 

 

Recapture Life

Recapture Life, is one of the largest mental health randomized control trials for young cancer survivors worldwide.

  • The trial is ongoing, with our preliminary data strongly supporting the acceptability and relevance of Recapture Life to adolescents & young adults (AYAs). Distress amongst the AYA’s has reduced to below clinically-significant levels over the course of the 6-week program and after Recapture Life, AYAs reported improved adaptive coping skills and cancer specific quality of life. This study involves a large team of mainly part time staff, a group often forced previously to hot desk. 
  • Thanks to KWCF the staff now have the space to come together to work and that has increased communication  and study progress. In addition, the purpose built clinical booth has supported the delivery of the study intervention http://www.behaviouralsciencesunit.org/recapture-life.html

The education project:

  • A new three year program of work to further investigate the educational needs of children with cancer and other serious illnesses across Australia has been developed. This study will be undertaken by a PhD student, who will be supported by the successful establishment of a new PhD scholarship, co-funded by the Kids Cancer Centre and Ronald McDonald House Charities, which will commence in March 2014. The PhD program is highly translational, involving interviewing patients, parents and teachers to develop new resources to support the educational needs of children who are seriously ill. 
  • Desk space provided by the expansion of the facility within the KCC to accommodate this new student will support the candidate’s progression and attract a higher calibre of applicants. 

As part of the funding from KWCF to refurbish the facility, the BSU requested a purpose designed “clinical booth”. The objective was to provide an area that would ensure the confidentiality of research participants being recruited to a study, being provided with emotional follow-up, or participating in a psychological intervention. The area had to be sound proof and screened using opaque glass to provide privacy and confidentiality. These requirements are essential for ethical considerations and to establish participant trust, providing them with sufficient confidence to share private and often sensitive information. This booth has been used to support the implementation of two novel interventions, Recapture Life and Cascade, both of which utilise internet technology to host live, group-based, psychological interventions. All members of the group are visible on the computer screen and audible through speakers, as is the clinical psychologist leading the session. http://www.behaviouralsciencesunit.org/cascade-a-program-for-parents.html 

Cascade will be offered to more than 120 parents across 2014-2017, and Recapture Life will be offered to 90 adolescents and young adults, meeting the psychological needs of a large group of people, in both urban and rural settings across Australia, who have been seriously affected by childhood cancer.


We urge you to consider the children in a hospital near you.  Please donate, post cheques to: Kids with Cancer Foundation, PO Box 135 Westmead NSW 2145 or for credit cards: free-call any donations to 1800 255522, and we guarantee that 100% of these donations will be passed to families, or use this Donate now button or at the top of the page.

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