Impressions from Climb for a Cure Mount Kilimanjaro participants

"We have made great progress over the past two decades but we can't sit back and say the job is done when so many CML patients are still not receiving the best drug for them, and so few are achieving treatment-free-remission. With the Climb for a Cure Mount Kilimanjaro 2019 we wanted to do something a bit out of our comfort zone to celebrate 10 years of work by the iCMLf and to mark a new phase ...

"Researchers, patients, patient advocates, physicians and supporters of the Foundation joined us on the Climb for a Cure Mount Kilimanjaro 2019. For me this represents the whole CML community. It's how the community works together and responds together" (Nicola Evans, Chief Executive of the iCMLf)

"I spend my days treating patients with CML and we can treat them sucessfully, but the rest of the world is not like that. We have a bigger obligation to patients in other parts of the world that don't have what we have. I like this focus of the iCMLf" (Kendra Sweet - researcher and hematologist from the US)

"I pledged to do this for me and for all CML patients in Nigeria. CML is not known in Nigeria, the government doesn't know we exist because this is a rare cancer. What I really want to do is to make a change. It might not be possible in a lifetime but at least I will give it a try. It's better than not trying. From there I'll see what happens"(Andy Ojelabi - CML patient from Nigeria)

"The most amazing experience I've ever had, not only about climbing Kilimanjaro, but making this as a group and sharing our experiences" (Katia Pagnano - researcher and hematologist from Brazil)

"The perfect way to meet new friends, discover new places and challenge myself while supporting a noble cause. I would have never dreamed of climbing Mount Kilimanjaro. If I can do this, CML researchers can find a cure for CML" (Rihab Nasr - researcher and hematologist from Lebanon)

"Patients do this mountain climbing every day if they have the diagnosis. I wanted to show my small tribute to their daily struggle" (Vamsi Kota - researcher and hematologist from the US)

Climb for a cure 2019 - Ayla, Conny and Yunus Borowczak

"Thanks to effective medication, CML has changed from a fatal to a chronic disease. This is a great achievement and gives CML patients hope. But this is not enough – more can be done!Our children need a healing therapy! This is our highest priority as a family and we want to reach the top and achieve a cure for CML."(Conny Borowczak with her daugher Ayla and her son Yunus - a CML patient)

The iCMLf TFR Alliance - Optimising Treatment Free Remission

While a cure for CML remains the ultimate goal, treatment free remission (TFR) is often the treatment target for those on TKI therapy. Still, with only around 50% of attempts resulting in sustained TFR, there is much room for improvement.

The iCMLf TFR Alliance brings global researchers together with the aim of ensuring more people with CML can stop therapy and sustain TFR.

In 2022 the iCMLf TFR Alliance partnered with the HARMONY Alliance for a TFR project: Use of big data to identify optimal treatment pathways leading to successful treatment-free remission in CML. The objective of this research project is to effectively evaluate a multitude of factors that may predict and influence a successful TKI discontinuation for patients with CML, allowing for a sustained TFR, which could potentially be linked to long-term cure of the disease.

“By utilising the Harmony Big-Data Platform, and using pooled data from multiple contributors within the International CML Foundation Treatment-Free Remission Alliance, we plan to investigate key components and actions potentially influencing the outcome of TKI discontinuation.” (Torsten Dahlén, Project Lead)

Project status

23 sites from 16 countries are enrolled to participate in the iCMLf/HARMONY TFR project.

Current status:

8 sites are finalised, with upload, transfer and mapping completed
3 sites are finalising mapping & 8 sites are waiting for mapping to begin
4 sites are still transferring data & 4 on hold or just starting the process
2,320 cases available for analysis with approximately 1,900 still coming

We sincerely thank Incyte, Novartis and Pfizer for supporting the outcomes of the iCMLf TFR Alliance.

History of the iCMLf TFR Alliance: Establishing a global registry for TFR

Established in late 2019, the iCMLf TFR Alliance has now evolved into a global network of 41 collaborators from 21 countries aiming to enhance successful TFR attempts for people with CML.

In 2020 the TFR Alliance began the process to establish an International TFR Registry as an optimal way to study clinically (and pharmaco-economically) important research questions on treatment-free remission. Initial seed funding from the iCMLf Climb for a Cure was awarded to the Swedish CML Registry Group following a call for proposals.

Collage Swedish CML Group

Torsten Dahlén (M.D.), Martin Höglund (M.D., PhD) and Leif Stenke (M.D., Professor) from the Swedish CML Registry Group lead the iCMLf TFR Alliance Registry project

Following a community survey to define the registry parameters and outcomes, priorities for the TFR registry were established and we moved to the 'set up’ phase.

In October 2020, HARMONY PLUS was launched. CML data could be accepted to the Big-Data platform and the iCMLf/HARMONY TFR project was proposed and accepted as the way to collate and analyse multinational TFR data.

HARMONY Plus platform – Big data to improve CML treatment

“Harnessing the power of pooled patient-level data we hope to identify the optimal treatment pathway leading to an increased likelihood of a successful, prolonged TFR, allowing for better guided clinical care” Torsten Dahlén

The HARMONY Big Data Project facilitates data pooling and sharing for specific hematologic malignancies with a central repository of data. Genomic and clinical data is collected from multiple research groups that contribute anonymised data in a secure way following all legal and ethical requirements.

HARMONY Plus is an extension to the project to expand the scope of data sharing to other hematologic malignancies, including CML. The HARMONY Plus project team is collaborating with the iCMLf TFR Alliance to facilitate the multi-country contribution of clinical and outcome CML data to the HARMONY data platform, to answer key clinical questions using Big Data.

Make a difference in the fight against CML

You can donate to the iCMLf research projects by visiting our donation page to get involved and make a difference in the fight against CML.

We are grateful to Pfizer and Incyte for support for the analysis and publication of the iCMLf Alliance projects.

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Registered Address: International CML Foundation - 20 Eversley Road - Bexhill-On-Sea, East Sussex, TN40 1HE - UK