MORE MPN RESEARCH & AWARENESS – Incidence of Myeloproliferative Neoplasms: Population-based, US Data

[socrates_8]

Post by MPN-MATE Admin » Tue Jan 14, 2020 9:35 am

Evening all from Sydney...

The 'Findings' of this article are of great interest, in my view...

However, it is very important here to 'note' that these are the findings of a USA based study over a very long period of time, (c. 50 years), and a great many variables are more unique to that culture and their prevalence of ethnicities peculiar to the USA, other than what we might apply in our Australian experience.

Hence, so as I stated above; these findings, are of important interest to MPN data & statistic collection globally, yet they do not particularly qualify to us here in Australia in all regards... Why not? Simple, as yet a similar study in the Australian experience of MPNs has not as yet been undertaken. Why not? Well... I shall leave that answer for others to speculate upon...

However, my response is/was to create a Fundraiser to see Australian Research Institutions take up the MPN challenge and endeavour to contribute to the knowledge gap that exists in Australia...

Next Sunday week, I will appear on a Community Radio show to continue to raise awareness about MPNs in Australia. The host of that show sent me an email today requesting that I assist him understand the MPN incidence and its size in Australia. When he asked me the question:

"How many Australians are there that have an MPN?"

My answer is actually, I can't really say in any qualified way because there is 'NO RESEARCH' or 'AUSTRALIAN MPN DATA' has ever been collected or undertaken, that can accurately reflect the answer...

Hopefully, if I am successful in staging my 'RIDE' around Australia, one of those Research Outcomes might well be to conduct the Research that might someday better respond to questions concerning qualifying & quantifying MPNs in the Australian fora...

Incidence of Myeloproliferative Neoplasms: Population-based, US Data

—US incidence rates of myeloproliferative neoplasms, and relative survival, was largely unknown until last year, when NIH-funded research assessed epidemiologic trends between 2001 and 2012. Here’s what we’ve learned.

By Kristin Bundy

mpn-mate.com/forum/posting....

Thanks for listening... Happy 2020

Steve

[Osteomyelio]

Thank you for posting this, I’m in Florida so I appreciate it. Hope you get the Australian data studies

[socrates_8 in reply to Osteomyelio]

Cheers... me too...

[Simon96]

Hi Steve,

This article may be of interest to you... Changing incidence of myeloproliferative neoplasms in Australia, 2003‐2014

onlinelibrary.wiley.com/doi...

Cheers, Simon

[socrates_8 in reply to Simon96]

Hey there Simon...

Happy 2020 to you & yours too...

Thank you for your response Simon...

And actually, yes... I am, and was already aware of the study you have flagged and provided links for, as having been one of the first undertaken in Australia to date.

However, (and as is implied by the commentary), the study might best be described as crude and lacking the data to accurately reflect the true incidence of MPNs in the Australian fora...

The closing stanza states:

"Our study adds to a body of data from multiple countries with different mixes of race and ethnicity showing an apparent change in incidence patterns of MPN. These changes, particularly the declining rate of PV diagnosis, are still unexplained, but may reflect changes in investigation and reporting rather than a true change in incidence. As is the case for most population‐based registries, cancer registries in Australia do not routinely collect information about genetic testing, and so this precludes the opportunity to investigate how diagnosis and prognosis varies according to somatic driver mutations in different age and sex cohorts. Accurate enumeration of the MPNs is reliant on cancer registries having appropriate notification processes for these cancers. Accurate population‐based reporting, including the collection of genetic information, is needed to facilitate future studies of MPN etiology and to assess whether changes in practice alter survival."

Hence, I repeat my calls for a greater need to collect Australian MPN data, and to conduct the types of research needed to paint a more illuminating reflection of the true Incidence Rate (IR) of MPNs in Australia...

Cheers Simon...

Best wishes

Steve

[Simon96 in reply to socrates_8]

Steve, good luck with your missions ...cheers, Simon

[Hidden in reply to socrates_8]

It is always going to be difficult getting a true incidence rate as Cancer Registries can only record diagnoses. The problem with MPNs are that they can remain undiagnosed. Apart from incidental findings from an FBC and some symptomatic cases, my suspicion would be that a lot of cases remain undiagnosed as they are not necessarily considered in a death following a catastrophic thrombotic event.

[socrates_8 in reply to Hidden]

Hey Osidge...

Thanks for your reply... You make an interesting point here... And you are quite right of course. There are actually many good explanations as to why there might be more of a perceived 'knowledge gap' in relation to MPNs ...

However, the more salient observation I am trying to note is that we cannot learn much of anything about MPNs,( & specificallyin the Australian context), if Research & Data Collection is not being ardently pursued... in my view

Steve

(Sydney)