ASH – American Society of Hematology 2020

2020’s virtual ASH conference hosted some fascinating and ground breaking findings on MPNs.
This information is all courtesy of MPN Hub.



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When did I acquire my MPN?

Dr Jyoti Nangalia and a team of researchers from the Wellcome Sanger institute and Cambridge University in the UK will be presenting some fascinating findings at this years virtual American Society of Hematology (ASH) meeting.

Extensive genetic mapping by the team finds that MPNs “originate from driver mutation acquisition very early in life, even before birth, with life-long clonal expansion and evolution, establishing a new paradigm for blood cancer development. Early detection of mutant-JAK2 together with determination of clonal expansion rates could provide opportunities for early interventions aimed at minimising thrombotic risk and targeting the mutant clone in at risk individuals.”

Information about this presentation is available HERE courtesy of MPN Hub.

Dr Ann Mullally’s lab in the US has recently announced similarly fascinating findings. This research which further explores the cellular origins and development of mutations giving rise to JAK2 and MPNs, provides further evidence that mutations can develop decades prior to clinical presentation of MPNs, and can arise from a single hematopoietic stem cell.

More information on this important research is available HERE


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Risk of inflammatory bowel disease in patients with MPNs

The MPN Hub which launched earlier this year is “an open-access online resource, dedicated to providing balanced, credible, and up-to-date medical education in MPN.  It shares new data, evidence-based articles, therapy approvals, expert opinions, and international congress coverage to treatment teams and researchers around the world.”

MPN Hub has just posted recent research from a Danish nationwide cohort study which suggests that MPN patients are at higher risk of inflammatory bowel disease (IBD).

“The findings from this study suggest that patients with MPN are at a greater than 2-fold higher risk of developing IBD and are 40% more likely to have a prior IBD diagnosis when compared with matched controls. This association might be explained by a shared pathomechanism. Therefore, the increased IBD risk should be kept in mind when evaluating abdominal symptoms in patients with MPN; while, in IBD patients, persistent leukocytosis and thrombocytosis may indicate concomitant MPN.” MPN Hub.

The full article and journal reference are available HERE



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Swab a cheek and save a life

The Australian Bone Marrow Donor Registry is urging Australians to consider becoming a bone marrow donor.  It’s a very simple process through its ‘Strength to Give’ campaign.

Please ask your family, friends and their friends to consider becoming a donor.

For a small number of  MPN patients, the only possibility of prolonging survival is through a blood stem cell transplant. Many other blood cancer patients also benefit from stem cell transplants.

The Strength to Give donor recruitment campaign is targeted towards younger male donors (18 to 30 years old) as young male donors typically result in better outcomes for patients and increases their overall chance at achieving a full recovery (unfortunately only 4% of the registry are young male donors). It is also important to attract donors from different ethnic backgrounds as patients are more likely to find a match with a donor from the same ethnic background.

Some heart-warming stories from donors and more information is available from the Strength to Give website at


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National Strategic Action Plan for Blood Cancer launched

The Leukaemia Foundation has announced a ground-breaking initiative for people with blood cancer in Australia with the launch of the National Strategic Action Plan for Blood Cancer.

The Australian Government commissioned the Leukaemia Foundation to develop the National Action Plan on behalf of the blood cancer community.
The plan is a blueprint to coordinate and accelerate national efforts to improve survival and quality of life for people diagnosed with blood cancer and to support their carers and families.  It identifies four major priorities:

  • Empower patients and their families
  • Accelerate research
  • Enable access to novel and specialised therapies
  • Achieve best practice.

MPN AA provided input into the plan’s development and is one of the Leukaemia Foundation’s partners in the plan.

The plan is available HERE.


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MPN awareness day September 2020- video of patient webinar

If you were not able to join the inspiring and informative Australian MPN Awareness Day webinar, you can watch it HERE.
The MPNAA is grateful to Professor Andrew Perkins, Professor Wendy Erber, Professor Peter Baade as well as the Leukaemia Foundation and MPN patient Helen Williams for making this event possible.
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MPN Alliance Australia donates $15,000 towards groundbreaking MPN research at University of Western Australia

MPN AA is very proud to announce that with the help of our supporters, we have donated $15,000 for MPN research in Australia to Professor Wendy Erber and her colleagues, Dr Kathryn Fuller, Dr Henry Hui and Dr Belinda Guo at the University of Western Australia. The team are undertaking research on a new technique to see if they can detect which MPN patients may be at risk of progressing to leukaemia or marrow fibrosis. It is hoped this may ultimately provide an alternative to the current method of utilising bone marrow biopsies for the purpose of detecting the first signs of disease escape or progression. Although only a minority of MPN patients are affected, it is not currently known who this might affect or when this will occur. By the time symptoms appear, it is generally difficult to cure. Hence a predictor of progression may assist in providing treatment earlier and possibly providing cures.

The method the team will use is their own invention, and the one that won a Eureka Award (affectionately known as the “Oscars of Science”!) in 2018. As you will see from the Youtube video it is a flow cytometry method that enables the study thousands of cells to see if the cell-of-interest has the chromosome change that may predict progression.

We wish Prof Erber, and Drs Kathy Fuller, Henry Hui and Belinda Guo every success with their research and look forward to sharing their progress in the future.


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New international website – MPN Hub

We are pleased to discover that several European and American hematologists with a particular interest in MPNs have collaborated and established a website and twitter presence solely devoted to MPNs called MPN Hub. A facebook page and instagram account also complete the social media presence of the MPN Hub.

According to French hematologist Professor Jean-Jacques Kiladjian, MPN Hub ‘will be an open-access and unbiased educational website for all healthcare professionals …… providing the latest medical information, live congress coverage, trial updates, drug approvals, case studies as well as expert opinions.’
The twitter introduction states: ‘Lifting levels of knowledge in myeloproliferative neoplasms (MPN).  A global online platform providing latest treatment options and medical information.’

While patients are not MPN Hub’s primary audience, we believe this information is valuable for MPN patients to keep up to date about with developments in the MPN field.

For example, MPN Hub has been showcasing MPN findings from the European Hematology Association’s 2020 conference held ‘virtually’ in June this year.

Practice changing abstracts for MPN at the 2020 European Haematology Association conference

  • This is a 4 minute video overview by Professor Kiladjian.

Some of those practice changing abstracts relating to PV mentioned by Professor Kiladjian are at the links below.

  1. Should ropeginterferon become standard of care (SOC) for all patients with low-risk PV?
    While Ropeginterferon is not available in Australia, another form of pegylated interferon is available (called Pegasys).
    These findings are likely to be of particular interest to PV patients who are currently considered ‘low risk’.
    This study showed that while low risk patients are usually treated by phlebotomy only and aspirin, there were better results with interferon alpha compared with phlebotomy/aspirin only.
  2. PROUD-PV phase III results on ropeginterferon alpha-2b for polycythemia vera
    It is known that Ropeginterferon is able to reduce the Jak2 v617F allele burden. This article shows that it can also reduce associated mutations such as in TET2.
  3. TET2  mutations predict thrombotic risk in patients with polycythemia vera

Articles about drug developments/combinations in myelofibrosis presented at the EHA. This includes promising developments for MF patients refractory to ruxolitinib.

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Phase III study of Momelotinib launched to evaluate efficacy in myelofibrosis patients

Myelofibrosis patients may be interested to know that the pharmaceutical company Sierra Oncology has announced the global launch of the new phase III MOMENTUM clinical trial.
This trial is evaluating the efficacy of momelotinib, a JAK1, JAK2 and ACVR1 inhibitor, versus active comparator danazol in patients with symptomatic and anaemic myelofibrosis.

There are Australian sites in Adelaide, Melbourne, Newcastle and Perth – see Australian clinical trials database for further information. (We suggest searching with myeloproliferative neoplasms in the keyword category).

If you think that this clinical trial might be appropriate for you, we strongly suggest that you discuss this matter in detail with your haematologist to explore whether or not it would be suitable for your circumstances.
Read more about clinical trials here.




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Study invitation – investigating the impact of the COVID-19 pandemic

Researchers at Queen’s University Belfast and the University of Aberdeen, invite you to take part in an online research study investigating the impact of the COVID-19 (coronavirus) pandemic on caregivers and patients with cancer, pre-cancerous conditions and rare diseases.
This survey is open to all patients and caregivers aged 18 years or older. To participate in this study, you will need to complete a short survey based on your own experiences. This survey should take around 20-30 minutes to complete.  To access the survey please click HERE


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