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Australian & New Zealand Childrens Haematology/Oncology Group

News

Touched by Childhood Cancer

| News

During Childhood Cancer Awareness Month, we are highlighting how community members touched by childhood cancer are contributing to ANZCHOG’s research and clinical trial activities.

ANZCHOG first established our National Patient and Carer Advisory Group (NPCAG) in 2012 to enable consumers to provide advice into our research and clinical trial activities. Our current members are all parents of children diagnosed with cancer, and provide unique insight into the experience of families during and after their cancer diagnosis.

ANZCHOG supports members of the NPCAG to learn more about research, clinical trials and the general childhood cancer landscape, with annual meetings to provide education, opportunities to discuss the latest research advancements and upcoming trials. All members are also invited to attend our Annual Scientific Meeting, where they can learn from national and international leaders in this field.

“It is so rewarding to meet the amazing scientists, psycho-social researchers and healthcare professionals whose careers are dedicated to best outcomes for children and families who are faced with the cancer struggle; ranging from diagnosis to long term follow-up”, said Anne Kay, Chair of NPCAG.

NPCAG members participate in a variety of activities, including reviewing grant applications and patient/parent information and consent forms, providing input into trial development, and developing trial summaries for ANZCHOG’s website.

“It is a thrill to participate, as a member of NPCAG with our unique lived experience, particularly the clinical trial development phase”, said Anne Kay.  “We are able to question – is this trial a priority? Will this trial impose significant burden on the family, such as extra trips to treatment centres, adding to the financial and emotional drain? How toxic is the drug, and what might that mean for the child and the family? Ensuring that these factors are considered at an early stage can make a real difference to the final trial design.”

“My involvement with ANZCHOG has highlighted to me the importance of clinical trials and how vital these trials are to continually improve treatments available for children diagnosed with cancer,” said NPCAG member, Carolyn Blakemore.

Laurence Hibbert also highlights how his involvement with ANZCHOG has helped him make a difference at a national and local level.

“Joining NPCAG has given me a far greater knowledge about paediatric and adolescent and young adult oncology in our region and in both North America and Europe. This has enabled me to advocate locally and nationally on behalf of current and future patients and their families. The continuing education provided by ANZCHOG has given me the confidence to be able, for example, to give a presentation to a Federal Senate Committee regarding funding of rare cancer research. Also, by working with my fellow NPCAG volunteers over the years we have been able to share knowledge on how their local volunteer committees support their oncology families.”

We would like to acknowledge and thank our NPCAG for their ongoing commitment to ANZCHOG. Our organisation benefits immensely from the insights and advice of these dedicated parents.