Children with cancer and blood disorders, their families and healthcare workers across Australia are invited to participate in a world-first global survey that will shape the future of research into bone marrow transplants.
The Bone Marrow Transplantation in Paediatrics Priority Partnership, an international collaboration led by Murdoch Children's Research Institute (MCRI), is focusing on the journey of young patients receiving a bone marrow transplant and whether key questions or concerns about such transplants remain unanswered.
The project follows the gold standard method from the James Lind Alliance, which aims to address the discrepancy between what researchers choose to study and what patients and healthcare providers want to know.
From these survey responses, 10 research priorities will be identified and acted on. The survey will be available throughout Australia, New Zealand, the UK and The Netherlands.
MCRI Associate Professor Rachel Conyers said the bone marrow transplant collaboration, the first of its kind in the world, aimed to align the often mismatched goals of researchers and those with lived experience to ensure better health outcomes.
"Research on the effects of treatments often overlook the shared interests of patients, carers and clinicians," she said. As a result, the questions that they consider important are not addressed equally and many areas of potentially important research are neglected.
"Following the James Lind Alliance method will help us to ensure that those who fund health research are aware of what really matters to families. Uncovering these key priorities will enhance and improve the delivery of bone marrow transplants in children and improve patient's quality of life."
Raya, 15, was was diagnosed at the age of 10 with precursor B-cell lymphoblastic leukemia, a type of rare blood cancer.
Image: Raya, 15
After undergoing CAR-T cell therapy, a type of cancer immunotherapy treatment, a bone marrow transplant was required to prevent a relapse.
Nader Eloshaiker became his daughter's bone marrow donor as he was a close enough match.
