Autologous haematopoietic stem cell transplant (AHSCT)

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 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:

  • Gender
  • 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 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.

Registry Progress to Date

Revised AHSCT Position Statement and literature review published on the MS Australia website.
2020
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 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
Recruitment of research officer to manage the Registry.
2011
2022
Australian MS AHSCT Registry contract transferred to St Vincent’s Hospital NSW.
2016
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
Commenced data collection of Australians who received AHSCT locally or internationally between 2008 and 2013; Data collected: 2008 – 2013 = 30 individuals.
2012
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, 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

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Australian MS AHSCT Registry