Australian investigators presented the WhiMSICAL database at the American Society of Haematology (ASH) 59th annual meeting with 25,000 attendees discussing the latest advances in blood disease treatment.

ASH presentation author Dr Ibrahim Tohidi-Esfahani and co-Principal Investigator a/Prof Judith Trotman with the WhiMSICAL database poster at the American Society of Haematology 59th annual meeting on 9 December 2017

Australian Principal Investigators presented on WhiMSICAL database at the American Society of Haematology (ASH) 59th annual meeting. 25,000 haematologists at ASH discussed the latest advances in blood disease treatment.

The poster is available at 171205 WhiMSICAL ASH 2017 Poster

The key points of the WhiMSICAL database abstract and poster presentation include:

  • WhiMSICAL demonstrated as a robust data collection platform with feasibility of global use for WM patient-derived data
  • WhiMSICAL results appear comparable to registry data and formal validation is planned
  • WhiMSICAL will increase knowledge of presentations and treatment experiences of WM patients with an expanding body of “big data” from recruitment and ongoing data entry
  • WhiMSICAL has the potential to map real-world therapy compliance and efficacy along with global patterns of treatment access

The presentation at ASH was backed internationally by IWMF and Lymphoma Coalition.  The authorship of the ASH abstract including leading haematologists from the US, UK, The Netherlands, France and NZ should assist WhiMSICAL gain traction in the world medical community.  We are a quarter of the way to achieving the required 1,000 in the database for “big data”.  Strong WM patient support with medical community encouragement are the keys for future success.

Highlights from the WhiMSICAL database poster include:

  • The 279 participants were predominantly from the USA (45%) and Australia (23%)
  • Median age at participation was 67 years and at diagnosis 60 years
  • Fatigue was the most common symptom at diagnosis (44%)
  • From diagnosis to first treatment median time was 82 days
  • Forty different first-line therapeutic combinations were entered by 173 patients
  • Most patients had only one line of therapy (47%) or were untreated (24%)

Details about WhiMSICAL database are at http://www.wmozzies.com.au/index.php/whimsical/

10th International Workshop on Waldenström’s Macroglobulinemia Patient Conference, October 14, 2018, New York

The IWWM-10 International Doctor- Patient Forum will be held on October 14, 2018 at the NY Marriott Downtown Hotel in the heart of New York City, USA. 

This educational forum for WM patients and caregivers will follow the 10th International Workshop on Waldenström’s Macroglobulinemia for researchers and clinicians.

The NY Marriott Downtown Hotel is located at 85 West Street in lower Manhattan, near Battery Park, Wall Street and the 9/11 Memorial and Museum.

 

WhiMSICAL “Frequently Asked Questions” enhanced

Following feedback from WhiMSICAL members, the “Frequently Asked Questions” at http://www.wmozzies.com.au/index.php/whimsical/whimsical-frequently-asked-questions/  has been enhanced with additional explanatory detail.  Many screenshots have been included to assist in important areas such as getting started, consent, diagnosis, and pathology results.

Register for WhiMSICAL at:    https://www.cart-wheel.org

For further information or assistance send email to:        whimsical@iwmf.com

Please remember the cut-off for joining WhiMSICAL and updating details is in a week.

Act now so that your WM details are part of the WhiMSICAL submission to the ASH meeting in December.

WhiMSICAL database ASH Abstract is now available. Data accompanying Abstract is under embargo until 9 December.

The WhiMSICAL database abstract being presented at the American Society of Haematology (ASH) meeting in Atlanta on December 9th is available online at  https://ash.confex.com/ash/2017/webprogram/Paper103569.html

The poster itself and the data within it will be under embargo until December 9th. The abstract will be published in Blood in the December issue.

New WM patient details and test result updates entered in the WhiMSICAL database by the ASH meeting close-off on 16th November have been included in the data and poster being presented at the ASH meeting.

It is important that WM patients continue to join and update details  in WhiMSICAL at  www.cart-wheel.org    

This will increase statistical strength and assist to gain traction in the world medical community.

Consider it your personal contribution to advance research to develop better treatments and a cure for WM!

Information about WhiMSICAL database and how to join is detailed at  www.wmozzies.com.au/index.php/whimsical/.

If you have any questions, send them by email to  whimsical@iwmf.com.

The WhiMSICAL research team, led by researchers in Australia, has received approval to present their findings during a poster presentation at the American Society of Haematology’s annual meeting in December 2017. This is a significant achievement and validation of their efforts thus far, as not all applicants get approved to present at ASH! Congratulations should go out to all WM patients around the world who have participated thus far, as it is our data that made this possible.

The WhiMSICAL findings will be published after the ASH meeting, and will be made available to the WM community worldwide at that time.

Additionally, IWMF President Carl Harrington and the team will be presenting details and findings at the upcoming 3rd annual IWMF-LLS Strategic Research Roadmap Summit meeting. This is the meeting where leading WM researchers from around the world, gather to evaluate and discuss primary focus areas for WM-specific research. Details about the Research Roadmap are at www.iwmf.com/research/research-strategy

While the presentations at both meetings point to the viability of the WhiMSICAL database, there is a CRITICAL need for more patients to participate, and for more data to be entered by participants. With just a few minutes of our time, each of us can make a significant contribution to advance research to develop better treatments and a cure for WM…..and to assist in convincing government agencies to fund treatments for patients! See   more details and to participate at www.wmozzies.com.au/index.php/whimsical       As Andrew Warden, the Leader of the IWMF affiliate in Australia, WMozzies, stated recently on IWMF Connect (the IWMF’s online discussion group):
“The government funding authorities in the UK and Australia as well as Canada require objective evidence that the high cost of new treatments such as ibrutinib are justified in comparisons with current gold standard treatments. Rare diseases suffer because of lack of the required patient evidence. WhiMSICAL can help provide this evidence.”

The WhiMSICAL database is a vital complement to ongoing clinical trials. Both seek to provide strong relevant information needed to arrive at approvals for novel treatment protocols and to convince decision-makers to provide funding for those treatments.

As  Carl Harrington says, “if you want to ‘pay it forward’ and help current and future WM patients around the world, then participate in WhiMSICAL!  We all have our disease data. All we have to do is enter it in WhiMSICAL to make a difference for WMers now and in the future.”

See more  details about WhiMSICAL and participate now at www.wmozzies.com.au/index.php/whimsical  Set aside whatever you’re doing and do it now. Please help us reach 1000 participating WMers!

Why WhiMSICAL?  A single worldwide database to help researcher uncover hidden patterns in WM

 

Why participate?  The more WM patients …. the more useful the data  .. and the closer to a cure. You can help!

 

Click HERE to participate in WhiMSICAL

 

 

 

VIDEO: Dr. Trotman on BGB-3111 in Patients with WM

 

[AW1]The efficacy of BGB-3111 (a BTK inhibitor) in WM patients, is shown with Dr. Judith Trotman speaking in a 1 minute   43 second interview, on the website OncLive.  The video interview is at: http://www.onclive.com/onclive-tv/dr-trotman-on-bgb3111-in-patients-with-waldenstroms-macroglobulinemia

Judith Trotman, MD, clinical associate professor, medicine, Concord Clinical School, The University of Sydney and is the co-principal investigator on the WhiMSICAL WM Patient Database http://www.wmozzies.com.au/index.php/whimsical/

discusses results of a trial investigating BGB-3111 in patients with Waldenström’s macroglobulinemia (WM).

BGB-3111 is a very specific BTK inhibitor that has a very high, very good partial response (VGPR) rate in patients with WM, Trotman explains. Results showed that patients with WM did have very good responses with reduction in IgM from 33 g/L to 6 g/L and a rise in hemoglobin from 100 g/L to 140 g/L.

Patients also tolerated the drug well without any of the toxicities often seen with BTK inhibitors. Adverse events included very minimal bruising as well as minimal serious bleeding. This was an extremely well tolerated BTK inhibitor, with an overall response rate of 90% with 43% of patients achieving VGPR.  “What’s most important is that the patients feel fantastic on this agent! How can you quantitate energy?  , she adds.

 

WhiMSICAL database  News

Membership of WhiMSICAL database has grown threefold from 69 to 279 in the six months to 24 November 2017.  The International Waldenström’s Macroglobulinemia Foundation (IWMF) and its global affiliates, have driven this growth.  Multiple social media platforms have been used including online discussion forums, Facebook, email mailing lists and community newsletters. The international expansion has confirmed WhiMSICAL CART-WHEEL database as a robust global data-collection platform for WM patient-derived data.

 

 

The facility to print out their personal report with graphs and review any missing data with their clinician has proved valuable. Having all data  recorded in one place is useful. Frequently when there is a change in place of treatment, earlier test results are not available for online retrieval and included in graphs. 

The WM patient questionnaire completion has continued to be good in providing data on symptoms, pathology results, treatments, their tolerance and how they were accessed.

 The study Principal Investigators have utilised CART-WHEEL to develop the continuously expanding patient-derived dataset to provide a foundation for hypothesis generation. This has involved utilising independent samples t-test, cross-tabulation and Pearson Chi-squared around to improve the understanding of this rare disease.

 Upon further recruitment and encouragement of more complete and continuous data entry, an expanding and increasingly robust body of data will increase knowledge of the range of presentations and treatment experiences of WM patients. Future graduated database additions will include validated PROs (e.g. EuroQol EQ-5D-5L). WhiMSICAL has the potential to map real-world therapeutic efficacy, along with international patterns of treatment access.

 Initial analysis of real-world clinical data on presentations and treatments from participants in the WhiMSICAL project has been submitted to the American Society of Hematology (ASH) annual meeting in December in Atlanta, the most comprehensive haematology event of the year.

None of the research would have been possible without the WM patients who have contributed their demographic data, tumour type details and gene testing, family cancer gene testing, reports from clinicians, treatments, side-effects and other psychosocial and family information via the CART-WHEEL database. As the number of participants joining the team increases, we will obtain the big data required to make a major impact in the field of WM and see how truly informative this research can be. 

Additional WM clinicians who have joined the WhiMSICAL database team as authors of the ASH abstract, are Dr Marie Jose Kersten (The Netherlands), Dr Ruth Spearing (New Zealand), Dr Lia Palomba and Dr Sheeba Thomas (U.S), Dr Shirley D’Sa (UK), and Dr Loic Ysaebert (France).

New WMozzies flyer 


The new WMozzies flyer is now available. It provides information about WMozzies and the support services provided to Waldenström’s Macroglobulinemia patients throughout Australia.

It is produced in  a 3 column double  sided fold-out format as shown below.

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WM incidence in Australia

Australia has around  90 new cases of WM annually.  Graham W one of our whizz WMozzies researches in Sydney has extracted the latest information from the official Australian Government statistics of the Australian Institute of Health and Welfare as below.   This includes the:

·       WM incidence in Australia 2001-13

·       WM incidence by Age

·       Australian WM population incidence compared to United States

It is estimated that about 10% of WM patients are members of WMozzies.

A new WMozzies A5 flyer has been drafted to assist recruitment of new WMozzies members