The Maddie Riewoldt’s Vision-funded Evaluating MultidisciplinaRy Bone maRrow fAilure CarE (EMBRACE) study has provided over 400 Australians with Bone Marrow Failure Syndromes access to an evidenced-based model of care that provides tailored treatment targeted to their individual needs.
EMBRACE measures the impact of providing Australian patients with bone marrow failure an accurate genetic diagnosis, up-to-date and comprehensive information about the disease, and access to expert care, treatment and the opportunity to participate in research.
One of the most crucial steps in treating patients with Bone Marrow Failure Syndromes is determining an accurate diagnosis so patients can access the treatment they need as soon as possible. Different Bone Marrow Failure Syndromes can be impossible to distinguish on standard laboratory assessments, and complex genetic testing is required to reach the correct diagnosis. Genomic testing as part of the EMBRACE trial has provided patients and families with the clarity they need along with access to the best treatments for their conditions.
An important outcome of this project was the development of an evidence-based model of care that has been informed by physicians and patients and is unique in Australia. Since the study started:
EMBRACE has already had success stories that highlight the incredible impact of this study. After a 10-year-old patient was diagnosed with Myelodysplastic Syndrome based on bone marrow biopsy, the patient was referred to Maddie’s Vision Centre of Research Excellence executive member Dr Lucy Fox for genomic investigation as part of the EMBRACE study. The EMBRACE team confirmed an underlying diagnosis of Shwachman Diamond Syndrome, which had predisposed the child to developing Myelodysplastic Syndrome. Thanks to the EMBRACE study, the patient will receive life-long care which takes into account his underlying Bone Marrow Failure Syndrome.
The EMBRACE study is a groundbreaking project that is changing the way we treat Bone Marrow Failure Syndromes in Australia. The project’s success has resulted in an evidence-based model of care that can be used across the country, providing patients and families with comprehensive expert care.
This is the most exciting research news for patients with inherited bone marrow failure....Read more
We are thrilled to announce that Grant Round 1, 2022 Captain Courageous Fellowship has...Read more
On October 13-15, the Maddie Riewoldt’s Vision Centre of Research Excellence in Bone Marrow Biology was proud to host the 3rd National Symposium on Bone Marrow Failure Syndromes. It was ...Read more