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Issue 09

  |  

July 2019

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

Welcome to the ninth edition of the UKMF e-newsletter. We aim to provide healthcare professionals with updates on our work at the UKMF as well as relevant Myeloma information of interest.

In this summer issue, you will find information on the Autumn Day on Thursday 7th November 2019. The theme will be ‘The Management of Relapsed Disease and its Consequences’ and will feature the Michael Morley lecture from Professor Thierry Facon from the University of Lille. We are also delighted to welcome a past Chair and founder, Professor Curly Morris, who will make a Valedictory lecture to mark his retirement.
 
In other news, Sarah Henshaw, Myeloma Clinical Nurse Specialist at the Centre for Clinical Haematology in Nottingham University has spear headed the creation of a Myeloma Nurse group in order to assist in the national standardisation of nursing care for people living with Myeloma and associated conditions. The group will sit under UKMF umbrella and will produce an annual Myeloma Nurse Educational Day.  The Myeloma Nurse group will develop nurse led guidelines on supportive care issues in myeloma and associated conditions. The group will encourage nurse led research and publication.  

To be kept up to date with these and other UKMF initiatives, follow this link to the membership page of the UKMF website. You can also join the myeloma conversation on Twitter @UKmyelomaforum.

Thank you to all those who applied for a travel bursary towards the IMW in September 2019. A report from the meeting will feature in the next issue. Meanwhile, we thank Professor Gordon Cook for his review of EHA Amsterdam June 2019. To view his report, click on link. https://www.ukmf.org.uk/news/2122/.

Please remember log in to our members section on the UKMF website, we have case studies and presentations from the recent Trials Day. If you are having difficulty accessing this area, please contact Wendy@ukmf.org.uk

Changes are afoot to the Exec committee in the autumn and we will keep you posted on these developments in our next issue.

Finally, from everyone at the UKMF, enjoy the summer break and we look forward to seeing you at the Autumn Day in November. 

With best wishes

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UKMF Communications lead


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The UKMF is a growing organisation and 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. To access the membership form, please click here.

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With thanks to our Platinum sponsors, who generously support the UKMF travel bursaries; Amgen, The Binding Site, Celgene, Takeda and Sanofi Genzyme.

Members are eligible to apply for a number of generous travel bursaries to international meetings. Watch this space as members we be informed about how to apply for 2 x £1,000 bursaries to attend ASH in Orlando on 7-10 December 2019. We will also put details on the UKMF website. Please contact Wendy@ukmf.org.uk if you would have any queries.

Congratulations to winners of the joint UKMF Platinum sponsor Travel Bursary to IMW in Boston; Wei Yee Chan (UCL) - The Binding Site, Firas Al-Kaisi (Nottingham City Hospital) - Takeda, Roisin McAvera (Queen's University Belfast) - Celgene and  Sarah Bird (Royal Marsden) - Amgen. 

Thanks to Dr Neil Rabin and Dr Ceri Bygrave and also to Michelle and Dalia for sending us your conference reports from ASH.You can find these on our website. Here is a link. https://www.ukmf.org.uk/community-updates/conference-reports/

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At the Scientific Workshop in March, we were delighted to welcome  Professor Sigurdur Kristensson from the University of Iceland, pictured here alongside Prof Gordon Cook, who presented the Michael Morley lecture on 'Early diagnosis – Learnings from iStopMM Study'. Talks can be downloaded by following this link to our website. 

Our educational activities with emphasis on science and clinical practice run twice a year. Our next event will be the Autumn Day on Thursday 7th November 2019 at Cavendish Conference Centre in central London. The theme for the meeting will be the ‘The Management of Relapsed Disease and its Consequences’ and will feature the Michael Morley lecture from Professor Thierry Facon from the University of Lille. The programme is now available on our website and can be accessed here. 

Dates for your diary:
- Thursday 19 March 2020, Scientific Workshop
- Wednesday 11 November 2020, Autumn Day

To register for our events, please visit www.hartleytaylor.co.uk. 

Please note that the early registration fee is £70 (£50 for Scientists and Nurses), which will increase to £110 (£85 for Scientists and Nurses) two weeks prior to the event.

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

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The 2nd Oxford Myeloma Workshop will be held on the 1st and 2nd August at St Catherine College, Oxford OX1 3UJ. This workshop is focused on the priorities of translational research in Myeloma. There is an excellent line up of speakers for the meeting. Please register on the website www.oxford-myeloma.org.uk/conference2019

4th South West BMT & Cellular Therapy Training Day
Bristol, Thursday 5th September 2019

This meeting will provide attendees with State of the Art Lectures, Updates in Car-T Cell Therapy and Cases and Dilemma in BMT & Cellular Therapy 4th South West BMT & Cellular Therapy Training Day - Flyer
To Register - click here
 
UK CLL Forum Clinical Sciences Day
Edinburgh, Friday 20th September 2019

This year’s Clinical Sciences Day will take place in Edinburgh to coincide with iwCLL2019. The theme will be CLL in the UK and beyond in 2019. UK CLL Forum Clinical Sciences Day Programme
Registration is free of charge - click here 
 
UK MDS Forum Education Day
London, Thursday 26th September 2019

This meeting will provide attendees with knowledge of latest research, new treatments, prevention and control in Myelodysplastic Syndromes.
UK MDS Forum Education Day - Programme
Register – click here
 
1st North West BMT Training Day
Manchester, Friday 27th September 2019

This new meeting for 2019 will provide delegates with high calibre lectures and updates in BMT 1st North BMT Training Day - Programme
To Register - Click here

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The last twelve months have seen intense activity involving NICE technology appraisals in relapsed Myeloma. Members of UKMF forum also help develop NICE clinical guidelines and more recently input into NHS England Myeloma 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. UKMF is currently discussing a new Advocacy strategy, more details to follow. 

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Dr Simon Stern is the Chair of the UKMF Guidelines committee. Our guidelines group goes from strength to strength with a number of updates to the myeloma guidelines being published in recent years as well as new guidance in a number of areas including imaging and the late effects of treatment. Please click here for a report of recent activity.

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The UKMRA held its 4th Trials Day on the 14th  May 2019 and the UKMRA are very grateful to the UKMF for funding this event.
 
UKMRA trials update: Myeloma XII is recruiting at least 24 months ahead of schedule thanks to your active involvement. We anticipate completing recruiting in the autumn if not before. The follow-on study is in development (Myeloma  XVI) with early discussion around the question and design.  Myeloma XIV is due to open imminently (Q2 2019), and this is an important upfront elderly MM trial. Myeloma XV addressing questions in the upfront newly diagnosed transplant eligible patients will open later next year. Following the success of the TEAMM trial, TEAMM2 is been designed and 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, bone disease and VTE, has been submitted in May 2019 for funding form the NIHR.

In terms of our early phase trials, the MUKCTN cease to exits on the 31st of December 2018, with several studies in recruitment or follow up: MUK9 (dose dense delivery in molecular high-risk disease) high risk Myeloma trial is recruiting well. MUK8 (IxaCyDex vs CyDex in RRMM) closed in December and is in follow-up. 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. 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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Myeloma UK and the UK Myeloma Research Alliance launch new research programme
Myeloma UK and the  UK Myeloma Research Alliance (UKMRA) have launched a new research programme to continue support for patient-centric myeloma clinical trials in the UK, the UK Myeloma Research Alliance-Myeloma UK-Concept and Access Research Programme (UKMRA-Myeloma UK-CARP).
This new initiative will combine the patient insight from Myeloma UK with the experience and expertise of the UK Myeloma UK Research Alliance and the University of Leeds Clinical Trials Research Unit (CTRU) to develop a portfolio of early phase clinical trials. The investment from Myeloma UK will help catalyse trial development and facilitate funding from external sources such as pharmaceutical and diagnostics companies to support the delivery of innovative trials developed through the UKMRA-Myeloma UK-CARP.
The grant is funding the core infrastructure to support any researcher wanting to initiate an early phase trial which helps facilitate a change in clinical practice or provides an evidence base to support access to new treatments.
To find out more about the UKMRA-Myeloma UK-CARP contact the University of Leeds Clinical Trials Research Unit. Read more, here.

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Executive Committee:

Prof Gordon Cook (Chair), Dr Guy Pratt (Secretary),
Dr John Ashcroft (Chair Elect), Dr Neil Rabin (Treasurer),
Prof Kwee Yong (Past Chair), Dr Rakesh Popat,
Dr Karthik Ramasamy, Dr Rachel Hall, Dr Ceri Bygrave, Dr Simon Stern,
Dr Matthew Streetly, Dr Ashutosh Wechalekar, Dr Andy Chantry, Dr Richard Soutar,
Dr Martin Kaiser, Dr Sarah Lawless, Dr Matthew Jenner, Sarah Henshaw
 
 
Registered Charity Number 1082702

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

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