Replies

• Links updated for you, Catherine.   Bw, Clementina
  27th August 2024

• Dear All,

  We have confirmed that the next maintenance mode for the EBMT registry (https://www.ebmt.org/registry/registry-release-updates) will occur between the 14-17th May (Start 14th May at 12:00 CET to 16th May at 16:00 CET) with updates that will likely affect the data in the registry. During this time, you will not have access to the EBMT Registry. Taking this into consideration, the BSBMTCT Data registry has decided to extend the deadline again for the BSBMTCT Executive Summary/Commissioner’s Report data submissions.  This means you can carry on submitting your data until 11a.m on Tuesday 14th May 2024 and after 15:00p.m on Thursday 16^th May 2024. Any data entered before the 20th May will be included in the reports.

   

  Reports will then be available in October 2024.

   

  We would like to thank you all for your submissions.

   

  Any questions do not hesitate to contact Julia via emails: julia.lee@kcl.ac.uk, Julia.lee6@nhs.net

   

  Kind Regards,

  Clementina
  
  1st May 2024

• Hello Andrea, I understand how frustrating that can be. I think you have done the right thing by reporting to the EBMT helpdesk. Did you include a screenshot? I have tried opening a record but can't see any such errors popping up. I'd say not to be in hurry to update any record for now - wait for a response from the helpdesk to ascertain if it's a bug or something.   Best wishes, Clementina
  25th April 2024

• Hi Cat, Try to refresh your browser - it works! It's only a pdf attachment. Also check that you can access pdf files on your pc/laptop.  You can send us an email if you have any more problems opening it - we'll send you the pdf file if you don't already have it.     Cheers, Clementina
  2nd October 2023

• Hi Catherine, The link certainly works; maybe you needed to refresh your browser- it was copied from EBMT.
  2nd October 2023

• Hi Catherine, Updates to your centres DM contact list has now been made. I understand your frustration. I guess the EBMT can request information from your centre based on your centres membership obligations and the type of information requested may differ as well as it's format and purpose. Our main aim for this list is so we can contact your team and so your team can contact other DM teams within the community if required. Have a fulfilled rest of the week.   Bw, Clementina
  19th September 2023

• Hi Catherine, I'm sorry if we haven't removed your contact from our list prior to this update. Could you send the request to my nhs.net email please? I'll have it sorted. Just to clarify though, our updated contact list which was put up in the forum yesterday is different from your user list sent out to EBMT ( for the purpose of creating logins for the database). The attached list are details of current DM's and their alternative team members which we can contact should there any data related queries for any of our centres. Most centres send their request directly to our registry head or our generic email. I hope this is clearer and helpful in the long run.
  19th September 2023

• Welcome to the team, Rebecca. We are glad you found these current Modules very helpful. More modules would be released soon and i'm sure they'll equally be of great benefit. Remember to follow the Discussion Board Topic where the IM Launch was mentioned. That way, you can keep updated when they get released. Bw Clementina
  11th April 2023

• Hi, Getting familiar! The avatars are lovely!
  20th February 2023

• Hello Niamh, I've been to the Annual Meeting severally; though only gone face to face 1 time. I would say the physical meetings are very lovely on a networking level; you get to see key stakeholders on a one-to-one basis and network based on your requirements. As per the Data Management sessions, i know Silvia did mention at our DM Training Day that there's going to be training/demo sessions for the new system and i think it would be a good opportunity to ask your questions direct to the EBMT team available on the day. Plus, you get the very 1st hands-on feel of it. There's usually more information nearer the time as per the structure of each session.  In the interim, if you have any direct related CAR-T data questions please feel free to send it to their helpdesk: cellulartherapyhelpdesk@ebmt.org Best wishes, Clementina
  1st December 2022

• Thank you Rik - we look forward to that too.   Bw BSBMTCT Registry Team
  17th September 2021

• Hi Niamh, I had a word with my colleague and we think you need to give some more clarity on this for an appropriate advise to be shared with you. For example, was the diagnosis done in the middle of a transformation from FL to DLBCL; in this case perhaps the FL diagnosis was missed and then as it began to proceed into DLBCL, it was diagnosed such that symptoms of both diseases where found on diagnosis? Or, is it a case of the FL being known and patient's been on a "wait & watch" and as soon as it was transformed to DLBCL, they were treated for DLBCL due to a more predominant DLBCL disease symptom and probably a slightly residual disease symptom of the FL?  The scenario would determine how you actually enter your data.     Clementina
  29th August 2019