MPNs now included in Australian Cancer Atlas

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In what we believe could be a world first, myeloproliferative neoplasm (MPN) data is now included in the latest Australian Cancer Atlas. This Atlas provides national data on how cancer diagnosis and excess death rates vary by geographical area across Australia.  This latest update incorporates details about the geographical patterns in MPN diagnoses and survival across Australia from 2007-2016.

The inclusion of MPNs is the initiative of Cancer Council Queensland, in collaboration with QUT.  The MPNAA donated $10,000 towards this initiative and wishes to thank in particular Professor Peter Baade and his team, Dr Jess Cameron as well as WA’s Professor Lin Fritschi for their dedication to enabling MPNs to be part of this important resource.

The Australian Cancer Atlas is an interactive online resource helping researchers, members of the community, medical professionals and policy makers understand how the cancer burden varies by small geographical areas across Australia. It is fascinating to see how MPNs diagnoses vary across Australia, as well as MPN survival rates.  The Atlas enables users to easily visualise those differences and offers critical insight into how the patterns of cancer and outcomes in Australia vary depending on where people live, which can be used to drive research priorities and policies going forward.

Professor Baade said that “The Australian Cancer Atlas has already proven itself to be an invaluable resource and benefit to many Australians, gaining industry, scientific and community acclaim. By updating the data contained in the Atlas ensures it remains relevant, and provides a great foundation for the next phase of development.”

MPN patient Jolanda Visser from the MPN Alliance Australia said that she was pleased to hear about MPNs being included in the Atlas.  MPN Alliance Australia’s $10,000 donation was raised through a major fundraising dinner organised by Jolanda Visser held in 2018. “Having looked at the Atlas and seeing that we can retrieve MPN stats is making me feel very good,” said Ms Visser.  “It is exciting that patients like me will be able to look at this information about MPN in their local area.” The MPNAA is keen to optimise the accuracy of MPN data, which is reliant on reporting of MPNs within each state and territory. The MPNAA will be liaising with stakeholders with the aim of maximising the integrity of this data to further inform research and health outcomes.

Co-lead on the Australian Cancer Atlas, the Distinguished Professor Kerrie Mengersen from the Queensland University of Technology said the latest editions would greatly benefit the Queensland community.  “The Australian Cancer Atlas is a shining example of what can be achieved by combining cross-institutional expertise in statistics, e-research and cancer,” said Professor Mengersen.  “This collaboration is inspiring since it not only benefits our community but also leads to new knowledge and new research.”

For more information on the Australian Cancer Atlas, please visit, atlas.cancer.org.au.
To access MPN data, MPNs are listed in the Atlas as Classic MPN.

Image from the fundraiser Charity dinner organised by MPNAA’s Jolanda Visser.

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VIrtual MPN patient conference – 20 February

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The 12th Joyce Niblack Memorial Conference for MPN patients is being held as a virtual conference on 20 February this year.
Featuring many of the world’s leading MPN experts and researchers, it is a brilliant opportunity for MPN patients to stay up to date with the latest evidence and information on MPNs.
The conference is patient focussed and free to attend. All that is required is to register.
To view videos from the conference, see HERE.

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ASH – American Society of Hematology 2020

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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?

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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

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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

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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 strengthtogive.org.au.

 

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National Strategic Action Plan for Blood Cancer launched

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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 Alliance Australia donates $15,000 towards groundbreaking MPN research at University of Western Australia

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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

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

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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.  The survey is now closed.

 

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