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Issue 10

|

Jan 2020

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In this issue: » Membership
» Travel Bursaries
» Education
» Other educational events
» Advocacy
» Guidelines
» Research
» Nurses
» Myeloma UK
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Introduction

Welcome to this packed new year issue, our tenth edition! Here we aim to provide healthcare professionals with updates on our work at the UKMF as well as relevant Myeloma information of interest. 

Firstly, I would like to take the opportunity on behalf of the UKMF to say a huge thank you to Gordon Cook who has finished his term as Chair. He has been a visionary and popular leader and will stay on the Exec for a further 3 years as past Chair. The new Chair is Dr John Ashcroft, who is a Consultant Haematologist and Honorary Senior Lecturer at Mid-Yorkshire Trust, University of Leeds and University of York. Dr Neil Rabin became the new Chair elect and Dr Rachel Hall has taken over the role of Treasurer. Also our sincere appreciation goes to Prof Kwee Yong and Dr Ashu Wechalekar who have both finished their tenure at the UKMF Executive . As a result, we asked the membership for nominations for two ordinary members and we are delighted to welcome Dr Jonathan Sive (UCH) and Dr Shelly Lawson (University of Sheffield) on to the Exec. Our Executive biographies can be found by following this link https://www.ukmf.org.uk/about-us/executive-committee/

As part of Gordon's leadership, he has been instrumental in establishing the 'College of Myeloma’, which will act as a peer counsel and advisory role for the Executive. This will keep key respected individuals who have contributed to the field of myeloma engaged and involved with the UKMF and will help to inform the Society's future. Professors Curly Morris and Kwee Yong are the first members to be invited into the College. 

Following the recent success of the Autumn Day in November 19, our next education event will be the Scientific Workshop on 19th March 2020. Details can be found in the Education Section below. Please sign up early to snap up the early bird registration offer. 

We are proud to include a new myeloma nurse section in the newsletter. This will be the space to keep you informed of key issues and activities surrounding the myeloma nurse group led by Sarah Henshaw.

Travel bursaries to EMN Amsterdam in April are now available and we encourage our members to apply. More information can be found on how to apply for an EMN bursary in the Travel Bursaries section below.  

For those of you who were not able to attend IMW in Boston we thank Guy Pratt and Rachel Hall for their conference report from this meeting. More conference reports from this meeting can be found on our website. We would also like to thank Guy Pratt and Rakesh Popat for producing a 'Best of ASH 2019' paper. A link to this can be found here. 

I would also like your feedback on our website. Which pages do you find useful? What would you like to see more of? What can we drop? Please get in touch, via wendy@ukfmf.org.uk with your comments and suggestions. You an also Tweet us, using @UKmyelomaforum. 

Finally, from everyone at the UKMF, happy new year! 

With best wishes

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UKMF Communications Lead


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Membership is free and has a number of benefits such as regular updates regarding our activities including upcoming clinical trials, new guidelines, information regarding educational meetings, meeting reports and progress in access to new drugs. By being a UKMF member, this gives you an opportunity to be part of the Executive and to be able to vote for Executive members. To access the membership form from our website, please click here.

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Members are eligible to apply for a number of generous travel bursaries to international meetings. We have sent out information on how to apply for 2 x £500 bursaries to attend EMN Amsterdam in April 2020.

The UKMF along with Celgene and Takeda awarded two travel bursaries to attend ASH in Orlando. Congratulations to Alexia Katsarou, a Clinical Research Felllow and PHD student at Imperial College London and Ana Martins Metalo, a postdoctoral Research Associate at Kings College London. We thank both of them for their conference reports from ASH which can be found by clicking here.

Thank you to Dr Guy Pratt and Dr Rachel Hall and also Wei Yee Chan, Roisin McAvera and Sarah Bird for sending us your conference reports from IMW Boston in September. Also our appreciation goes to Guy Pratt and Rakesh Popat for their overview of ASH 2019 and Alexia Katsarou and Ana Metelo for their conference reports.You can find these on our website by following the link. https://www.ukmf.org.uk/community-updates/conference-reports/

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At the Autumn Day in November, we were delighted to welcome Professor Xavier Leleu from Poitiers University Hospital pictured here who presented the Michael Morley lecture on 'Endpoints and treatment goals in relapsed/ refractory myeloma'. Talks from the day can be downloaded from the meeting page on our website. 

Our educational actives with emphasis on science and clinical practice run twice a year. Our next event will be the Scientific Workshop on Thursday 19th March 2020 at the Cavendish Conference Centre. The theme for the meeting will be 'Accelerating research: better trial designs, better therapies' and will feature the Michael Morley lecture on 'How to get better outcomes and value with better trials' from Professor Mohammad Mohty from Saint-Antoine Hospital and Sorbonne University.The programme is now available on our website and can accessed here. 

Date for your diary: Wednesday 11 November, Autumn Day in central London

Please note that early registration fee is £70 (£50 for Scientists and Nurses) until 4th March which will increase to £110 (£85 for Scientists and nurses) from 5th March. Commercial and pharma collaborators will have a designated rate.  

We would be delighted to hear suggestions for future topics or themes that may interest you. Please feel free to email wendy@ukmf.org.uk with your suggestions.

The UKMF will again present a joint symposium at the BSH Annual Scientific meeting in Birmingham on 27th April 2020.
The theme for the session will be the 'Impact of frailty on outcomes in myeloma'. Presentations will include:
- Clinical assessments of frailty in myeloma - Alessandra Larocca (Torino).
- Biomarkers and lab assessments of frailty - Jonathan Kauffman (Atlanta)
- How do we use these to design clinical trials and affect clinical practice - Professor Gordon Cook (Leeds)

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Post ASH Orlando Highlights
This series of three meetings covers the highlights from ASH Orlando. The meetings will be held in January/February 2020 and will take place in London, Manchester and Bath. This meeting is suitable for consultants, trainees, nurses and pharmacists working in haematology. Registration details available here.

UK CLL Forum Annual Scientific Day
Closer to deciphering disease complexity
 
Thursday 12 March 2020
Cavendish Conference Centre, 22 Duchess Mews, London W1G 9DT
 
Guest speakers including:
 
Dr Iñaki Martin-Subero, IDIBAPS, Barcelona, Spain
Dr Alexander Egle, Paracelsus Medical Centre, Salzburg, Austria
Dr Eric Elderling, University of Amsterdam, Netherlands
Professor Hassan Jumaa, University of Ulm, Germany
 
Online registration opening very soon.
Please contact alex@collaborativeconferences.co.uk to register your interest or to request further information.

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The UKMF members have continued to engage with the NICE technology appraisals both in newly diagnosed and relapsed myeloma. Members of the UKMF forum also help develop NICE clinical guidelines and more recently input into NHS England Algorithm. 

Please click here for an update on UKMF advocacy. It is absolutely vital that we remain engaged in discussions with NICE and other stakeholders to ensure best care is delivered to all of our patients across the country.

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Our guidelines group goes from strength to strength with a number of updates to the myeloma guidelines being published in recent months as well as new guidance in a number of areas including AL amyloidosis. Please click here for a report of recent activity.

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UKMRA trials update: Myeloma XII is recruiting well, nearing the target but we encouraged centres to still look for suitable patients. The follow-on study is in development (Myeloma  XVI) with early discussion around the research question and design.  Myeloma XIV is due to open imminently (Q1 2020), and this is an important upfront elderly MM trial. Myeloma XV addressing questions in the upfront newly diagnosed transplant eligible patients will open later in 2020 (Q/Q3). 
Following the success of the TEAMM trial, TEAMM2 is being designed and the final proposal needs to be reviewed by the group prior to being submitted for funding consideration. The supportive care platform, ENCOMPASS which looks to develop qualitative and quantitative research in the disease-related morbidity settings of renal dysfunction, infection and VTE, has been submitted for funding consideration by the NIHR in November 2019.
In terms of our early phase trials, the MUKCTN ceased to exist on the 31 December 2018, with several studies in recruitment or follow up: MUK9 (dose dense delivery in molecular high-risk disease) high risk Myeloma trial has finished recruitment. MUK8 (IxaCyDex vs CyDex in RRMM) is nearing its primary end-point read out with the database lock occurring in December 2019. MUK7 (PomCyDex vs PomDex) is in follow up. Following the awarding of a core programme grant from MUK to the University of Leeds, the UKMRA CARP has been established as our accelerated vehicle for delivering early phase studies in alignment with the run-through research strategy of the UKMRA. The first two studies, PROMISE (CARP 2019/001) and ATOMM (CARP 2019/002) are at an advanced stage of development.
The UKMRA remains a collaborative organisation based on collegiate working and inclusivity, under the auspices of the UKMF. Positions on the senior leadership team will be available from July 2020, and there will be an election for a new vice-chair at the same time. Any interested candidates are welcome to contact Professor Gordon Cook for informal discussions.

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We are proud to introduce the UK Myeloma Nurse group to our members. The purpose of this group is to assist through best practice in the national standardisation of nursing care for people living with Myeloma and associated conditions. The group aims to:
  • develop an annual Myeloma Nurse Specialist/Research Nurse Educational Day
  • Develop nurse led guidelines on supportive care issues in myeloma and associated conditions
  • Encourage nurse led research and publication

This space is where you can find updates. To get involved or to find further information, please contact sarah.henshaw@nuh.nhs.uk

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The Myeloma UK Early Diagnosis Steering Committee is a panel of experts dedicated to identifying and tackling the major issues preventing early diagnosis in myeloma. The Committee is trying to better understand the inconsistencies in laboratory testing for myeloma patients at diagnosis. The Committee would be very grateful if UKMF members would complete this short questionnaire (less than 5 minutes to complete), aimed at haematologists which explores the interaction between the laboratory and primary/secondary care. Earlier work by the Committee showed that only 26% of laboratories provide comment on the possible underlying condition and only 45% recommend a referral to haematology. This survey will be hugely valuable to the Committee in its work to better support primary care physicians in diagnosing myeloma. Thank you.

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Executive Committee:
Dr John Ashcroft (Chair), Dr Rachel Hall (Treasurer),
Dr Guy Pratt (Secretary), Dr Neil Rabin (Chair Elect), Prof Gordon Cook (Past Chair),
Dr Rakesh Popat, Dr Karthik Ramasamy, Dr Ceri Bygrave,
Dr Simon Stern, Dr Matthew Streetly, Dr Andy Chantry,
Dr Matthew Jenner, Dr Richard Soutar, Dr Martin Kaiser,
Dr Sarah Lawless,  Sarah Henshaw (Myeloma Nurse Group Chair),
Dr Jonathan Sive, Dr Shelly Lawson
Shelagh McKinlay (Myeloma UK)
 
Registered Charity Number 1082702

Website www.ukmf.org.uk
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UKMF · UKMF · Dept of Haematology, UCH · London, London NW1 2PJ · United Kingdom

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