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 around 50-60% of people achieving sustained TFR there is much room for improvement.
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 2021 the TFR Alliance began the process to establish an International TFR Registry that will be an optimal way to study clinically (and pharmaco-economically) important research questions on treatment-free remission.

To set up the registry, initial seed funding from the iCMLf was awarded to the Swedish CML Registry Group following a call for proposals. In August, a first meeting was held to define priorities for the TFR Registry and a survey to define the registry parameters and outcomes was sent out to the community. We meet in February to finalise the registry priorities and move into set up phase.

Learn more about the TFR Registry and how to get involved...

Establishing a global registry for TFR

Last year, the iCMLf called for proposals to create, launch and run a global registry of treatment free remission (TFR) cases to facilitate data exchange and research on TFR. An independent panel of CML experts awarded the initial grant of US$100,000 to the Swedish CML Registry Group to establish a TFR registry on behalf of the iCMLf TFR Alliance.

Congratulations to Torsten Dahlén (M.D.), Martin Höglund (M.D., PhD) and Leif Stenke (M.D., Professor) from the Swedish CML Registry Group!

An abstract outlining key objectives and different phases of the planned global registry (input phase, creation of the database and visual interface) was presented at the John Goldman Conference on CML in October 2021.

Read the full abstract here

Input phase – Initial survey distributed to Alliance members

In a first step, in November 2021, the Swedish CML Registry Group conducted a survey amongst the TFR Alliance members to identify available prospectively and retrospectively collected clinical and laboratory data in local initiatives, as well as data from multicentre clinical trials.

First responses from collaborators have been received and the results are currently under evaluation. First data from the survey will be shared during the next TFR Alliance meeting in February and will also be presented during the ELN CML Working Party Meeting in March to widen the reach of the registry.

The TFR registry is open to collaborating with other centres and/or organizations.

Please email info@cml-foundation.org if you would like to participate.

Creation phase – Next steps

Registry creation is expected in March 2022 and data input is planned to start in May. Depending on data availability and additional funding, the research database for external access will be available during 2023.

Aim of the iCMLf Global TFR Registry

The purpose of the global registry is to generate data on clinically actionable biomarkers and to validate predictors for TFR success. It will also look at other aspects of TFR outcomes (late relapse, etc.), and facilitate exchange of clinically annotated samples from registry patients to further our understanding about the biological and molecular features of TFR.