iCMLf Annual Report 2023-24

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Founded by a dedicated group of hematologists, the iCMLf is committed to ensuring every

What we do

Everything we do centres on three main goals:

Share BEST PRACTICE and enable collaboration between global and regional CML experts, so that people with CML get the BEST POSSIBLE TREATMENT with the resources available.

INCREASE THE RESOURCES AVAILABLE to research, diagnose and treat CML, particularly in low and middle-income countries.

Utilise the i CMLf ’S GLOBAL RESEARCH NETWORK to shift the treatment paradigm towards a cure.

See our work in action

In every way, the iCMLf has improved physician education around the world. But the biggest impact of the iCMLf is the benefit to patients. The iCMLf has shown that just a few people who are committed to the disease can impact the world.

Welcome from our Chairman

The ability to bring knowledge, information, and access to everyone globally has been the most impactful element of our work. It has democratised CML education and empowered many to improve patient outcomes in their regions.

As the newly appointed Chair of the iCMLf, I am deeply honored to lead this unique and extraordinary organisation during a time of continued progress and opportunity in CML management and research. My journey with the iCMLf has always been fuelled by a commitment to improving patient outcomes all over the world, and now, as Chair, I am more determined than ever to drive our mission forward. The past year has been marked by tremendous strides in our research, education, and global collaborations—each step bringing us closer to realising our vision of a world where a cure for CML is not just a hope, but a reality. Our CML community, epitomised by the iCMLf, is a tightly knit community of friends and colleagues from various backgrounds all working towards the betterment of CML outcomes and research all over the world.

One of the iCMLf’s greatest strengths lies in our ability to foster connections between CML physicians, scientists and advocates from across the globe. These connections enable us to share knowledge, resources, and innovative practices that directly impact the lives of people with CML. This year, we have seen the fruits of these collaborations, with exciting progress on the Treatment-Free Remission and Genomics research projects as more sites from more countries contribute and join our efforts to understand and improve the nature of CML and the treatment pathways.

Improving CML through sharing knowledge and expertise has always been at the core of the iCMLf’s work. This continues to build as our programs expand from the global Knowledge Centre into regional focused discussions and work directly with local and regional Hematology Societies. In this way we ensure all our activities are relevant, effective and sustainable within the unique context of the specific healthcare environment. As you delve into this report, you will see the tangible outcomes of our efforts and the stories of those whose lives have been positively transformed by the work we do.

Looking ahead, my vision for the iCMLf is to build on our achievements so far, amplifying our impact through even more robust partnerships and innovative ideas to improve our reach and impact. Our focus will continue to be improving outcomes for people living with CML, wherever they are in the world, and ensuring that every person living with CML receives the best possible care. Together, with the support of our dedicated community, we will continue to make a profound difference in the lives of people with CML. Thank you for your support for the iCMLf.

Professor Jorge Cortes, USA

Highlights

Education to improve CML management

Physicians from 150 countries joined our programs.

65% are low and middle-income countries

Expanding our reach to expand our impact

6,400 people accessed our online content

8.6k views and 535 hours of education watched

Nearly 15,000 program participants

840 in attendeesperson

58 CML experts donated their time

Research to improve CML treatment

46% growth subscribers

3 study publications

124,000 social media impressions raising awareness of CML research and education worldwide

2 active studies with 27 sites from 19 countries and 3,500 datasets collected

Advancing CML care through global research projects and collaboration

The iCMLf is dedicated to addressing the unanswered questions of the global CML community through scientific research projects and publications.

We aim to to bridge knowledge gaps, enhance clinical practice, and ultimately cure CML.

Current focus:

1. Big Data analysis: Collate available data to identify pathways, biomarkers and diagnostic cues to improve patient outcomes.

2. Investigate the complexities of treating pediatric CML

3. Gather 'Real World' data to further our understanding of the disease and its management globally

THANK YOU To all physicians and researchers who contributed to our projects, provided data and to the authors of these important publications.

iCMLf Publications to further understanding and knowledge of CML

Survey on Pediatric CML Management in Low and Middle-Income Countries (LMICs)

First publication offering valuable insights into the complex challenges of managing children with CML across LMICs.

Pediatric CML in LMICs: Case Review Series

Recognising the unique challenges of pediatric CML, especially in LMICs, the iCMLf launched a new series of case reports. These present comprehensive discussions of challenging cases from multiple expert perspectives.

Case 1 a boy presenting with priapism and loss of vision (India)

Case 2 will be presented from Brazil.

COVID-19 in patients with CML: final results from the global CANDID study

The iCMLf has been at the forefront of understanding the impact of COVID-19 on CML patients through the iCMLf CANDID study. This global observational study collected and analysed data from 1,056 COVID-19 cases among CML patients across 177 institutions in 57 countries.

Final results were presented during the European Hematology Association meeting in 2024

Big Data Projects

Global alliances, part of our cure consortium, bring experts together to improve CML outcomes. Despite progress, many patients still rely on lifelong drugs with severe side effects or face high-risk bone marrow transplants. These alliances allow us to collaborate efficiently, sharing data and samples to tackle these challenges effectively.

Professor Tim Hughes, Australia

Investigating Clonal Hierarchy in CML

The iCMLf Genomics Alliance is making significant strides in understanding the genetic factors that drive CML.

The Alliance is analysing genetic data from thousands of CML patients, aiming to uncover the hierarchy of genomic events in CML, enhancing our understanding of how genetic variations impact treatment outcomes, ultimately improving patient care.

1,147

datasets ≈300 to come

12 sites from

11 countries

SITE LEADS

Sue Branford Australia

Dennis Kim Canada

Jiri Mayer Czech Republic

Katerina Machova Polakova

Andreas Hochhaus Germany

Thomas Ernst

Giorgia Quitarrini Italy

Carlo Gambacorti

Ahmad Alhuraiji Kuwait

Tomasz Stoklosa Poland

Mohamed Yassin Qatar

Tiong Ong Singapore

Charles Chuah

Ruth Stuckey Spain

Maite Gómez Casares

Lee-Yung Shih Taiwan

Optimising Treatment-Free Remission

Achieving Treatment-Free Remission (TFR) is a crucial goal for many CML patients on Tyrosine Kinase Inhibitor (TKI) therapy. The iCMLf TFR Alliance is focused on increasing the success rates of TFR, enabling more patients to stop therapy while maintaining remission. This Big Data project in partnership with HARMONY PLUS evaluates factors that predict successful TKI discontinuation, potentially linking it to long-term cure.

2,310

datasets available 2,300 still to be uploaded

23 sites from 17 countries

THANK YOU

The iCMLf Alliance projects are supported by our generous Climb for a Cure donors along with

SITE LEADS

Carolina Pvalovsky Argentina

Tim Hughes Australia

Naranie Shanmuganathan

Fernanda Seguro Brazil

Katia Pagnano

Dennis Kim Canada

Daniela Zackova Czech Republic

Franck Nicolini France

Francois-Xavier

Fanny Robbesyn

Philippe Rousselot

Andreas Hochhaus Germany

Susanne Saussele

Hemant Malhotra India

Carmen Fava Italy

Silvia Marini

Carlo Gambacorti-Passerini

Giorgia Quitarrini

Ahmad Alhuraji Kuwait

Vasile Musteata Moldova

Charles Chuah Singapore

Rolando Vallansot Spain

J Valentín García Gutiérrez

Ruth Stuckey

Torsten Dahlén Sweden

Lee-Yung Shih Taiwan

Jane Apperley United Kingdom

Empowering Health Care Professionals Worldwide

The iCMLf Knowledge Centre is a valuable portal, ensuring that all doctors, regardless of their location, have access to the latest information and updates from experts in the field. This is crucial for doctors who manage multiple diseases and need efficient access to specialised knowledge in CML.

Dr Valentin Garcia Gutierrez, Spain

iCMLf Knowledge Centre

1,262

program views from 76 countries

437 Module views

The new module, provides valuable insights into the challenges and considerations surrounding CML in patients who are assessing their fertility, who are currently pregnant, along with those attempting to conceive.

There are now 8 expert-led modules advancing clinical knowledge and fostering a collaborative approach to tackling CML challenges globally.

NEW MODULE: PREGNANCY AND FERTILITY WITH CML

Impact of CML on Fertility and Pregnancy in Women –Professor Jane Apperley

Medical and Surgical Management of Priapism in Patients with CML – Dr Mohamed Yassin

Effects of TKIs on Spermatogenesis, Male Fertility and Fatherhood in the era of TKIs – Dr Mohamed Yassin

CML and Pregnancy in Resource Constrained Environments – Dr Amma Anima Benneh-Akwasi Kuma

Real-world Outcome of Pregnancy in CML – Dr Elisabetta Abruzzese

Current Recommendations for Pregnancy in Established CML – Dr Elisabetta Abruzzese

Regional Discussion Groups

The iCMLf Regional Discussion Groups provide a crucial platform for physicians to engage with CML experts and address region-specific challenges.

Launched in 2023, these groups focus on sharing best practices and discussing complex cases to improve patient outcomes.

9 meetings

3 continents

It was such a well organised webinar with lots of knowledge from all over the globe and very well attended. Myself, our residents and junior consultants all enjoyed the activity.

Dr Mehreen Ali Khan, Pakistan

44 countries

20 from Africa

15 from Latin America

9 from South Asia

36

250 expert speakers

1,370 attendees

Simultaneous translation in Spanish and Portuguese added in 2024 views

THANK YOU Novartis Brazil for supporting the Regional Discussions in Latin America

EDUCATION

Sharing expertise online

I have gained a lot of knowledge about CML technologies and treatments from iCMLf, which has significantly impacted our ability to treat patients in Sudan. The continuous updates and shared experiences with global experts have been invaluable.

Dr Abdelhakim Gaber, Sudan

iCMLf Clinical Conversations

The iCMLf Clinical Conversations provide a unique platform for clinicians, researchers and patient advocates to engage with leading experts in the field of CML.

3 participants

on-demand views more than 2,000 Conversations

90

THANK YOU

We extend our heartfelt thanks to all the experts who generously shared their time and knowledge.

iCMLf Case Discussion Forum:

Enhancing best practices in CML Management

The iCMLf Case Discussion Forum allows experts and interested clinicians to discuss complex or challenging CML cases, offering a unique opportunity to share experiences and treatment approaches to offer practical advice on treatment decisions.

Most frequently viewed cases:

1 A 19-year-old patient on asciminib as fourth-line therapy

2 Pregnancy in CML

iCMLf Papers of the Month

8,000

3 Pediatric CML relapse post allogeneic transplant case views

The ‘CML Papers of the Month’ is a selection of important publications on CML from Professor Timothy Hughes Many physicians do not have the time to do a full publication search each month so by sharing our paper highlights the iCMLf provides the CML community with the most relevant research and information. New

CML Paper Summaries

Building on the success of the ‘CML Papers of the Month’, the iCMLf introduced a new series of ‘CML Paper Summaries’. These summaries, edited by Professor Hughes, will provide an overview of key CML publications that are not ‘open access’. This will further help the CML community stay informed about important milestones in the field of CML research. The first summary in this series, published in July 2024, highlighted the ASC4FIRST study from the New England Journal of Medicine (Hochhaus H et al.).

Even for the most complex of patients, we have a platform with iCMLf where we can discuss challenges and get advice on the next steps. This international collaboration has made it easier to convince patients to be compliant because they see a future where their needs are prioritised.

Nigeria

EDUCATION

Sharing expertise in person

Indian Cancer Congress and Friends of Max, India

Indian Cancer Congress

During the Indian Cancer Congress in Mumbai, India, Professor Hemant Malhotra welcomed Professors Hughes, Saglio, Cortes for CML panel discussion and debates during an ISMPO-iCMLf JOINT SYMPOSIUM.

'Meet the Expert'

Leading Indian hematologists joined together for an open 'Meet the Expert' discussion on challenges treating CML in India and forward thinking to improve treatment free remission rates

Friends of Max Foundation

We were privileged to join people with CML and their families at a Friends of Max Foundation meeting. They shared inspiring and sometimes heartbreaking details of their journey's with CML. Sincere thanks to Viji and all her colleagues for making us so welcome.

Patan Hospital, Nepal

Professor Gyan Kayastha and Dr Mipsang Lama welcomed our CML experts and team to a packed auditorium discussing ‘Hematological Malignancies with a focus on CML’. They then spent time on ward rounds and in the CML clinic to learn more about CML treatment in Nepal and advise on specific cases.

ESH-iCMLf 25th John Goldman Conference, France

The annual John Goldman meeting is a highlight of the CML calendar. It brings leading scientists, clinicians and patient advocates together in a joint mission to learn, and collaborate as we work to improve outcomes for people with CML.

San Diego, USA

The iCMLf Forum at the American Society of Hematology meeting celebrated the achievements of the iCMLf climb, and showcased data from our research projects and the impact of our work in low and middle income countries.

attendees from 41 countries

It

was great to have the ideas of our partners and supporters as part of the conversation as we look to the future of the iCMLf.

iCMLf Prizes for 2024 RECOGNITION AND AWARDS

Professor Neil P. Shah | USA

The iCMLf Rowley Prize acknowledges outstanding contributions to the understanding of CML biology. Professor Neil P. Shah has been recognised for his groundbreaking translational research, particularly his profound insights into the molecular mechanisms of resistance to Tyrosine Kinase Inhibitor therapy. His work has significantly advanced our knowledge of these mechanisms, leading to vital breakthroughs in developing strategies to overcome drug resistance.

Professor Jeff H. Lipton | Canada

The iCMLf Goldman Prize honors outstanding contributions to the clinical management of CML. Professor Jeff H. Lipton is celebrated for his remarkable advancements in clinical practice. His extensive research includes pioneering clinical trials that have explored novel agents aimed at overcoming drug resistance, as well as significant work on the management of patients post-allogeneic stem cell transplantation.

The iCMLf Prize acknowledges significant contributions to improving CML treatment in low and middle-income countries, addressing the challenges of unequal access to monitoring and treatment. Viji Venkatesh is recognised for her remarkable work in advancing cancer care and patient support in resource-limited settings. Her visionary leadership and compassionate approach have led to the creation of unique CML awareness programs, significantly impacting cancer care and patient advocacy in India and beyond.

Viji Venkatesh | India
iCMLf Prize
Goldman Prize
Rowley Prize

Fundraising events

In July six cyclists from Incyte decided to Ride for a Cure, cycling 710km through the French Alps, raising funds for the iCMLf. We extend our heartfelt gratitude to the dedicated riders and everyone who supported Ride for a Cure.

John Goldman Fun Run

$10,000

The team’s dedication and resilience were truly inspiring. We are proud to support the iCMLf’s mission and make a tangible difference in the lives of those affected by CML.

Michael Hotze, Director of Medical Affairs Operations Europe at Incyte

With over 45 enthusiastic runners we surpassed previous records. THANK YOU

$2,400

In November 2023, 25 dedicated individuals, including scientists, doctors, and CML patients, embarked on a seven-day climb to Annapurna Base Camp.

$200,000 YOU RAISED MORE THAN

Climb for a Cure shows what is possible when people share a common vision and what they can accomplish together. It shows other patients how strong the CML family is. This cohesion gives courage and confidence.

Borowczak, CML Patient Advocate, Germany

I believe the climb inspires patients by showing that we are not defined by our disease. Despite daily challenges, we can achieve anything with determination.

Borowczak, CML Patient Advocate, Germany

THANK YOU

Thank you for your incredible generosity and for standing with us in making a cure for CML a reality.

Donors over $500

Ravi Bhatia

Malgorzata Bine

Carole Judd

Ron Hubert

Emil Kuriakose

Edward Fitzgerald

Thomas and Katrin Lowe

Chris Miskel

Janet Sanburg

Richard Silver

Kerry Taylor

Agnes Yong

Simtir Parmar

Tim Hughes

Jorge Cortes

Claudia Galoro

David Jones

Katia Pagnano

Peter Hatche

Claire Sultana

TR Reddy

Radha Prathikanti

Stefan Vill See our Annapurna video

Expenditure addresses the goals of the iCMLf

Program Expenditure

67% on Education and Awareness Programs

36% Directly supports people with CML in

11% on Research Projects

Corporate Supporters Thank

GOVERNANCE

Diverse committees advise and shape our goals

Board of Directors

Our board comprises of a group of world-renowned leaders in CML research and clinical practice, guiding the foundation’s strategic direction.

Chair

Augusta, USA October 2023

Jaipur, India - Joined 2023

APPERLEY London, UK

Portland, USA

Jena, Germany

NEW IN 2024

Patient Advisory Committee

Comprised of seven members from around the world, the iCMLf Patient Advisory Committee is dedicated to integrating the perspectives, needs, and priorities of CML patients into the Foundation’s programs and strategic directions, ensuring patientcentric approaches in all activities.

Scientific Advisory Committee

Our advisory committee includes 16 respected hematologists, scientists and patient advocates who provide support and guidance for our work.

Adelaide, Australia Chair until October 2023

Campinas, Brazil - Joined 2023

NEW ADVISOR

We are excited to welcome Dr Ehab Atallah from Milwaukee, USA to our Scientific Advisory Committee.

JORGE CORTES
JANE
BRIAN DRUKER
ANDREAS HOCHHAUS
TIMOTHY HUGHES
KATIA PAGNANO
HEMANT MALHOTRA
MICHAEL MAURO New York, USA
JERALD RADICH Seattle, USA
GIUSEPPE SAGLIO Torino, Italy
CHARLES SCHIFFER Detroit, USA
Dr Ehab Atallah

NEW

BOARD MEMBERS

Professor Hemant Malhotra and Dr Katia Pagnano will bring their extensive expertise in CML with valuable perspectives from low and middle-income countries, enhancing the strategic vision, governance, and global impact of the iCMLf.

Operational Team

Dr Katia Pagnano, Brazil

Our dedicated team ensures the effective implementation of our programs and initiatives.

NICOLA EVANS Chief Executive, Australia

ARLENE HARRISSBUCHAN Program Manager, Australia

STEFANIE BOCKWINKEL Communications Director, Germany

SARAH SWAROOP Communications Manager, UK/India

TERRI HEATH Digital Media Officer, Australia

TORRES Development Manager, USA

Equity of access to expert care and the spread of excellence must continue. While we may not achieve full equity in drug access, ensuring expert opinions and management plans are available globally is crucial.

Professor Jane Apperley, UK

Professor Hemant Malhotra, India
DIANA
Learn more about Professor Malhotra
Learn more about Dr Pagnano

The International CML Foundation is registered as charity no. 1132984 in England and Wales.

REGISTERED ADDRESS: International CML Foundation 20 Eversley Road Bexhill On Sea East Sussex TN40 1HE - UK

info@cml-foundation.org www.cml-foundation.org

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