Regional Projects
The CML AN steering committee in 2019 decided to launch a pilot project titled “Regional Projects” based on the different levels that member regions are on, and what each region needs. Below you can find out more about the series of regional projects we launched and completed during our pilot phase.
You are welcome to contact our Head of Member Relations, Events & Programme Manager Lidija Pecova at email: lidija@cmladvocates.net should you have any questions or suggestions about this project.
Central and Eastern Europe & West Asia
CML Atlas East Europe
CML Atlas East Europe is the final product of the East Europe and West Asia regional project run by CML Advocates Network.
CML Atlas presents most relevant data on CML which may be useful for local organisations, other regions and global network itself. Moreover, it compresses data from all the countries in the region and therefore organisations can compare data among countries and use that information for advocacy, fundraising and learning. Collected data are following:
- General information about CML (number of CML patients, number of CML organisations, number of hospitals treating CML, number of treating haematologists, hospital registries / national registries)
- Availability of TKIs (percentage of patients having access, prices, ways of drug availability)
- Availability of PCR (percentage of patients having access, prices, frequency of testing)
- Clinical trials (study centers, number of patients)
- Treatment free remission data.
General information about the survey (survey methodology):
Time: 1st December 2019 to 31st March 2020
Population: Respondents from 19 countries from Central and Eastern EU region. Respondents are CML advocates and CML doctors
Questionnaire: online questionnaire posted and run using cloud-based online survey development software Survey Monkey
All data collected and presented in CML Atlas are intellectual property of CML Advocates Network. Any further use of the data needs to be done with the permission of the CML Advocates Network and referenced to the project of the Network
Latin America
CML LATAM Project
CML LATAM Project is the final product of the Latin America regional project run by CML Advocates Network.
There is clearly a significant gap in global health-access inequalities in this region, especially for chronic conditions. The country and its people are unable to develop economically and socially as a result. The CML Advocates Network Latin American region reported that patient organizations representing that region share critical issues regarding patient access to treatment and monitoring tools, resulting in health disparities that are based on where people live and are born. A major objective of the study, despite its wide scope, was to highlight health disparities among CML patients and explain the patient journey between countries in the region.
Data was collected from fifteen patient organizations in thirteen countries by four patient advocates, through a questionnaire and online interviews with the leaders of the national patient advocacy organizations. As part of the study, the team interviewed ten leaders from Costa Rica, Uruguay, Paraguay, Panama, Guatemala, Mexico, Argentina, Chile, and Bolivia. Data collected for the different countries were shown on an interactive map, while interviews were also published online.
In the study, disparities were found between countries in terms of the patient journey for people living with CML. According to reported data, nine diverse processes define the sequence of events that a CML patient experiences within a national healthcare system, from diagnosis to treatment. You can access the CML LATAM Project website here for more information
All data collected and presented in CML LATAM Project website are intellectual property of CML Advocates Network. Any further use of the data needs to be done with the permission of the CML Advocates Network and referenced to the project of the Network
Asia and Pacific
Childhood leukemia incidence in Japan stands at 3%, but a growing number of patients are being treated for it. The lives of family members and patients in treatment are filled with anxiety because of the lack of information. With this in mind, we created a booklet with the purpose of sharing accurate information and treatment experiences.
Implementation method: Talk with a pediatric hematologist about how CML affects patients and share their actual treatment experiences.
Result: It has become possible for patients and their families to lead a positive treatment life by having colleagues they can consult with when they are facing anxiety or difficulties.
To learn more about this project, please visit our member website: https://www.izumi-cml.jp/cml-an.html