The Aplastic Anaemia and other Bone Marrow Failure Syndromes Registry reaches over 550 patients!

The Aplastic Anaemia and other Bone Marrow Failure Syndromes Registry (AAR) was the very first research project funded by Maddie’s Vision in 2016. As the major funder of the AAR for the last eight and a half years, we are thrilled to announce that the registry has exceeded 550 patients!

This is an incredible increase of over 100 patients in the last year alone.

Maddie’s Vision congratulates the AAR team at Monash University, and extends our gratitude to all participants, hospital staff and researchers for their time and commitment to the AAR. Your contributions to developing a more complete national picture of Bone Marrow Failure Syndromes will further advance and support scientific studies of these rare diseases.

The AAR, established in 2012, is a collaboration between the Transfusion Research Unit in Monash University’s Department of Public Health and Preventive Medicine, partner hospitals, clinicians, patients, families and Maddie Riewoldt’s Vision. Information regarding patient background, treatment and subsequent outcomes are critical to understanding diseases and developing new treatments. This information is hard to obtain in rare diseases like Aplastic Anaemia and other Bone Marrow Failure Syndromes, including inherited conditions. Registries like the AAR provide a method of collecting this information from individual hospitals and analysing them together for research purposes. Strict measures are in place to ensure confidentiality of individual patient data.

The aim of the registry is to better define the incidence of Bone Marrow Failure Syndromes in Australia. It provides information on the range of diagnoses and treatment strategies being employed, documents the specific genetic causes that underlie inherited Bone Marrow Failure Syndromes, explores factors influencing clinical outcomes, helps to identify optimal clinical management and informs and inspires and enables future research in this area. Over 550 participants have been registered from 39 participating hospitals across Australia.

With the combined efforts of our incredible scientific community, we will successfully accelerate research that will improve outcomes for Bone Marrow Failure Syndrome patients and bring us closer to finding better treatments and ultimately, a cure.

The more patients who participate across Australia, the more we can all learn about these important conditions – every patient counts! To find out more about the AAR and how to participate, visit the website for more details.