Australian MS AHSCT Registry
What is the Australian MS AHSCT Registry?
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 a small percentage of 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 Research Australia (with funding support from the MS Society of Western Australia), is coordinating and funding the Registry which is overseen by a steering committee of Australian haematologists and neurologists. The Registry aims to gather data and monitor the outcomes of Australians treated with AHSCT for MS.
This important Registry will add to the data being gathered worldwide on treatment effects, patient characteristics and outcomes, and long-term prognosis of patients following AHSCT. Together with the 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 of people who have already undergone AHSCT.
As of December 2015, over 50 people from around Australia have contributed data to the Registry. More than half of these underwent AHSCT between 2013 and 2015, so have less than one or two years of clinical follow-up data after the procedure.
Once the majority of participants in the registry have over three years’ clinical follow-up data post-AHSCT, 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 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 oversaw the AHSCT procedure.
The types of information collected by the Registry include:
- date of MS onset
- date of MS diagnosis
- disease course
- disease duration
- past MS treatment history
- chemotherapy conditioning regimen used
- date of AHSCT & procedure details (cell counts, hospital stay, complications and treatments)
- EDSS (disability) score pre & post AHSCT (including longer term follow-up)
- clinical details of disease severity pre and post AHSCT (including longer term follow-up)
- MRI lesions pre & post AHSCT (including longer term follow-up)
How do I contribute data to the Registry?
We encourage anyone who has received, or is planning to receive, AHSCT for MS either in Australia or overseas, to contact us at email@example.com to have your clinical data included in the AHSCT Registry.
We will put you in touch with the Australian AHSCT MS Registry Research Fellow who will provide you with more information and will need you to complete a consent form prior to contacting your doctor(s) to access clinical notes and data.
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 Research Australia is unable to assist people to access this form of treatment. People with MS are urged to contact their specialist MS physician for more information relevant to their individual circumstances.
Registry progress to date
- 2017-2018 – Expected publication of Registry outcomes
- 2016 – Renewal of funding for a further three years to support continued data collection and long-term follow-up of people in the registry; Revised Interim AHSCT Position Statement/guidelines and literature review published on the MS Research Australia website
- 2015 – Collected data from 12 individuals; Total participants: 54; Australian based data presented at the European Society for Blood and Marrow Transplantation conference, and at the Pan-Asian Committee for Treatment and Research in MS Conference; Original funding expired
- 2014 – Collected data from 11 individuals; Joint MS Research Australia-NSW Stem Cell Network Workshop on Stem cells In Multiple Sclerosis and Neurological Disease, May; Interim AHSCT position statement and guidelines published
- 2013 – Commenced data collection of Australians who received AHSCT locally or internationally between 2008 and 2013; Data collected: 2008 – 2013 = 30 individuals
- 2012 – Recruitment of research officer to manage the Registry
- 2011 – Funding secured to establish the Registry ($100,000 over three years)
Autologous Haematopoietic Stem Cell Transplant (AHSCT) Registry Steering Committee Members
Professor Allan Kermode (Chair), Neurologist, Western Australian Neuroscience Research Institute, WA
Professor Bill Carroll, Neurologist, Western Australian Neuroscience Research Institute, WA, and Chair MS Research Australia International Research Review Board, AUS
Professor Claude Bernard, MS/stem cell researcher, Monash Immunology & Stem Cell Laboratories, Monash University, VIC
Dr Colin Andrews, Neurologist, Canberra, ACT
Dr Emma Palfreyman, Haematologist, Canberra Hospital, ACT
Dr Gavin Cull, Haematologist, Sir Charles Gairdner Hospital, Perth, WA
Dr James D’Rozario, Haematologist, Canberra Hospital, ACT
Professor James Wiley, Haematologist, Florey Institute of Neuroscience & Mental Health, VIC
Associate Professor John Moore, Haematologist, St Vincent’s Hospital, Sydney, NSW
Associate Professor Mark Slee, Neurologist, Flinders Medical Centre, VIC
Dr Michael Pidcock, Haematologist, Canberra Hospital, ACT
Dr Robin Filshie, Haematologist, St Vincent’s Hospital, Melbourne, VIC