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Information about Clinical Trials in UK/Europe/USA

Hi All,

I was hoping that someone might have some info or pointers on getting information about clinical trails that are being conducted outside of the UK in respect of CAR T-Cell therapy for ALL. My wife had a transplant in March this year and after her +100 day marrow test the results came back with a positive reading for her leukaemia and whilst there are still things that are being done we are looking into all available options. My wife has ALL (Ph+).

I have been reading a lot about CAR T-Cell therapy for ALL and whilst I can find information out about clinical trials in the USA from the respective hospitals in the different cities, its hard to find a single source of joined up info. More frustrating than that is finding information out about what is happening in the UK and Europe. For both I have really struggled.

So, if anyone has been through this kind of exercise themselves and has any info/pointers to share I'd be really grateful. If anyones is interested in what we have found in the USA I'd be happy to post that aswell.

Thanks for reading


  • To add on this the UK Central Register for trials is
  • edited July 2016
    A doctor friend passed this to me...
    The US Central register and some 192 other countries is found at;
  • Hi Patrick,

    I'm sorry to hear about your wifes Leukaemia still showing after the transplant. I can imagine how disheartening that must feel but hopefully her medical team will find the right solution to get rid of it. I also had ALL (but can't remember if it was Ph+) and I guess I was lucky that the first month of induction chemo got me into remission. My transplant was therefore to reduce the risk of the Leukaemia returning as I was a high risk case.

    I was on the UKALL14 trial at the time but had no idea just how many trials were running until you posted the links. I guess information is more widely available to the medical profession and researchers than the general public and no doubt your wifes consultants will be aware of some trials through journals and bulletins. I think because of the nature of trials each will be conducted at small numbers of transplant centres rather than multiple trials being run at all centres. This will make sure that the medical staff become conversant with a smaller number of protocols rather than having to understand several differing treatment regimes.

    I see from the list on the NHS link you posted there are a couple that relate to CAR in relapsed patients which sound similar to what you're looking for, though they mention the studies being only run on children and young adults under 24. I know ALL is more traditionally a childhood Leukaemia so perhaps those trials or similar might be extended to those adults it also affects in the future?

    If none of the patients here can assist you, I'm sure one of the Anthony Nolan team (perhaps Hayley the Nurse Specialist) might be able to give you more insight into the trials process and how selection for particular trials occurs.

    I wish your wife all the best and hope the medical teams find a way of getting on top of her ALL quickly and effectively. Please keep us up to date with progress and keep in touch for further support.


  • Hello.
    I just wanted to reassure you that we are looking in to some of the details you mentioned Patrick. Hayley will be back in the office on Thursday and I have asked her to get back to you with any information we have.
  • edited July 2016
    More links that I have been sent by consultants/doctors

    WHO Clinical Trial list (this appears to be the largest registry in the world)


    European Central Registry

    Wikipedia Link on Trials which has markers to other countries
  • Hi Steve, Chiara,

    Thanks for the comments. Steve, yeah we spoke to our consultants at The Christie (Manchester) where my wife is being treated and also the Anthony Nolan on site nurse.

    The links I have added have come via those conversations and other doctors.

    There is a lot to go on and through but as you say its CAT T-Cell for relapsed ALL Ph+ trial that we are looking at specifically, but who maybe these links will benefit others with different blood cancers aswell.

    There are a couple of ongoing paediatric ALL trials in London and some upcoming adult ones in other hospitals that we are now aware of so hopefully we can find something that matches.

    Thanks again


  • Hi Patrick

    My name is Hayley and I am the nurse specialist in the patient experience team. I am sorry that your wife's leukaemia has shown signs of returning after the transplant. You are right that there would other options rather than just the CART T-cell therapy but it is understandable why you are exploring all avenues.

    CART-T cell therapy is new and from own experience as a CNS I have only known about trials in America. This is often expensive and consideration has to be made for fitness to travel and meeting the inclusion criteria. I have today made some enquires and there might now be some trials opening at Kings College Hospital London and University College Hospital London, so my recommendation would be to contact them for further information. This is not guaranteed and I do not think that these trials are currently open but you can at least find out when they might be and the inclusion criteria.

    Kings College require a referral from your wife's consultant regarding any trials and University College has a cancer clinical trials team and the email for them is CCTU.admin@uclh.nhs.uk

    I hope this has helped and please keep in touch with your wife's progress.

    Best wishes
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