Autologous Haematopoietic Stem Cell Transplant (AHSCT) is an immunosuppressive chemotherapy treatment combined with reinfusion of blood stem cells to help re-build the immune system. It has been used to treat some people with multiple sclerosis (MS) in Australia and internationally. However, more data on the long-term outcomes of this treatment and its most appropriate use for people with MS is still required. You can read more about what AHSCT is and the research behind it here.
To help contribute to the international efforts to increase our understanding of this treatment, MS Research Australia established the Australian MS AHSCT Registry in 2011. MS Australia (with initial funding support from MSWA), is coordinating and funding the Registry which is overseen by a steering committee of Australian haematologists, neurologists and people living with MS. The Registry aims to gather data and monitor the outcomes of Australians treated with AHSCT for MS who have had the procedure in Australia or overseas.
This Registry will hopefully add to the data being gathered worldwide on treatment effects, patient characteristics and outcomes, and long-term prognosis of patients following AHSCT. Together with international evidence, the Registry aims to increase understanding of the role AHSCT may play as part of the range of treatments available for MS, and under which circumstances it is most appropriately used.
The collection and analysis of new patient data are still ongoing, as well as collection of longer-term follow up data of people who have already undergone AHSCT. As of August 2022, over 100 people from around Australia have contributed data to the Registry.
Once a significant number of participants have been registered, and three years’ clinical follow-up data post-AHSCT has been collected, the Registry will be in a position to have good quality, reliable data and will publish the findings in peer reviewed medical journals. Publishing the outcomes from the Registry is a priority and these results will be made available to the MS community as soon as possible following scientific publication.
The Registry is collecting detailed treatment information and clinical characteristics of people who have undergone AHSCT. This information must be provided, with the consent of the patient, by the treating neurologist and by the haematologist who supervised the AHSCT procedure.
The types of information collected by the Registry include:
We encourage anyone who has received or is planning to receive AHSCT for MS either in Australia or overseas, to contact their neurologist to be included in MSBase. This is an online database that captures information about treatments and outcomes from people with MS worldwide.
Please note that this Registry is only for the follow up of people who have received, or are receiving, AHSCT under the care of their treating doctors. MS Australia is unable to assist people in accessing this form of treatment. People with MS are urged to contact their neurologist for more information relevant to their individual circumstances.
Professor Allan Kermode (Chair), Neurologist, Sir Charles Gairdner Hospital; Professor, Perron Institute for Neurological and Translational Science, WA
Professor William Carroll, Neurologist, St John of God Subiaco Hospital; Clinical Professor, Perron Institute for Neurological and Translational Science WA
Dr James D’Rozario, Haematologist, Canberra Hospital, ACT
Dr Michael Pidcock, Haematologist, Canberra Hospital, ACT
Dr Cassie Nesbitt, Neurologist, The Alfred Hospital, VIC
Associate Professor John Moore, Haematologist, St Vincent’s Hospital, NSW
Dr Jennifer Massey, Neurologist, St Vincent’s Hospital, NSW
Ms Erin Brady, Person living with MS, NSW
Dr Mastura Monif, Neurologist, Alfred Health and Royal Melbourne Hospital; Senior Research Fellow, Monash University
Ms Leonie Wilcox, Manager, Australasian Bone Marrow Transplant Recipient Registry
Dr Jo Gamble, MS Australia