HSCT guidelines. Have a read if interested

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Autologous haematopoietic stem cell transplantation and other cellular therapy in multiple sclerosis and immune-mediated neurological diseases: updated guidelines and recommendations from the EBMT Autoimmune Diseases Working Party (ADWP) and the Joint Accreditation Committee of EBMT and ISCT (JACIE). Sharrack B, Saccardi R, Alexander T, Badoglio M, Burman J, Farge D, Greco R, Jessop H, Kazmi M, Kirgizov K, Labopin M, Mancardi G, Martin R, Moore J, Muraro PA, Rovira M, Sormani MP, Snowden JA; European Society for Blood and Marrow Transplantation (EBMT) Autoimmune Diseases Working Party (ADWP) and the Joint Accreditation Committee of the International Society for Cellular Therapy (ISCT) and EBMT (JACIE). Bone Marrow Transplant. 2019 Sep 26. doi: 10.1038/s41409-019-0684-0. [Epub ahead of print]

These updated EBMT guidelines review the clinical evidence, registry activity and mechanisms of action of haematopoietic stem cell transplantation (HSCT) in multiple sclerosis (MS) and other immune-mediated neurological diseases and provide recommendations for patient selection, transplant technique, follow-up and future development. The major focus is on autologous HSCT (aHSCT), used in MS for over two decades and currently the fastest growing indication for this treatment in Europe, with increasing evidence to support its use in highly active relapsing remitting MS failing to respond to disease modifying therapies. aHSCT may have a potential role in the treatment of the progressive forms of MS with a significant inflammatory component and other immune-mediated neurological diseases, including chronic inflammatory demyelinating polyneuropathy, neuromyelitis optica, myasthenia gravis and stiff person syndrome. Allogeneic HSCT should only be considered where potential risks are justified. Compared with other immunomodulatory treatments, HSCT is associated with greater short-term risks and requires close interspeciality collaboration between transplant physicians and neurologists with a special interest in these neurological conditions before, during and after treatment in accredited HSCT centres. Other experimental cell therapies are developmental for these diseases and patients should only be treated on clinical trials.

This is open accesss so if you are interested in stem cell therapy to replace your immune system, please have a read and you can see what the experts think are the characteristics that may help you respond

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MouseDoctor

22 comments

    • Yet I’m fine, I have no problem with HSCT it is clearly effective, if the risk balance is good enough. However I am not a HSCT zealot.

      • I guess the zeal comes from personal experience of seeing someone close to you have their MS halted when the neurologist has poured scorn on the very possibility. It’s amazing how that will turn you into a zealot – particularly when the loved one in question had rapidly progressing SPMS with no active lesions.

        I’m relieved to hear you haven’t had a bump to the head!

  • Will this be a choice for people with MS now?

    Am I reading it right that this HSCT is ONLY available here in UK if you can get on a trial?

    How do you find out about a trial, who in our treatment would tell us, and if we have a 15 minute appointment once a year are we allowed to get in touch with neuro etc before then?

      • so it boils down to where you live in the UK?

        Is the criteria akin to you’ve been on stuff that hasn’t worked, your brain has shrivelled up a bit more so now you might fit the criteria?

        • I suspect you are part right, but maybe the NHS needs to be sued if they are offering post code service. You are supposed to have equal access to treatment

          • No – London accept patients from all over England. Wales, NI and Scotland come under different funding rules, but we live in Lancashire and my husband was treated at King’s, so it’s not a postcode issue. Very few hospitals are experienced in HSCT specifically for MS, so the majority have been treated in London.

          • @ALISON
            Who does the HSCT actual treatment? Is it neuros or cancer docs or haemotologists (sp)?

            How do you get referred to London? Do you go through your neuro?

            Ps, having another subtle day 😉

          • The MDT is made up of neurologists and haematologists and (contrary to popular belief!) you can get a referral to one of the London MDT neurologists from your GP – so if your neuro doesn’t approve of HSCT, that’s fine – you aren’t beholden to what they do or don’t want.

            The best information is in the UK Facebook group I posted earlier. This includes which neurologists are most sympathetic to HSCT and which…are not!

            HSCT is very much a heamatologist’s speciality. We have been at conferences where neurologists have fully admitted that they don’t know enough about HSCT to discuss it with their patients. Ours asked us to spell it.

          • But key to point out that it doesn’t have to be YOUR neuro who does the referral. A GP can refer you to a neuro on the London MDT who will decide if your case can be presented at the MDT.

            People need to be aware that their own neuro doesn’t have the casting vote, and that just because your neuro isn’t in favour of HSCT doesn’t mean it’s the end of the road.

          • Russia’s on there though.

            I think it’s more that the data relates to EBMT, which obviously doesn’t cover Mexico? It’s flawed if it’s claiming this is a global representation of HSCT – you can’t really ignore Mexico. While they may have a different method, the amount of cyclophosphamide is the same as Russia.

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