International Chronic Myeloid Leukemia Foundation (icmlf)

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Chastity Simpson
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1 International Chronic Myeloid Leukemia Foundation (icmlf) Improving the outcomes for patients with CML globally

clinical practice and disease monitoring in CML Executive committee: J Goldman, T Hughes, B Druker, J Cortes, M Baccarani, A Hochhaus, J

2 icmlf: Facts Established by a group of leading hematologists Founded & registered in 2009 as a charitable foundation Mission: to improve the outcomes for patients with CML globally Aims: Foster and coordinate global clinical and research collaborations and to improve clinical practice and disease monitoring in CML Executive committee: J Goldman, T Hughes, B Druker, J Cortes, M Baccarani, A Hochhaus, J Radich Scientific Advisory Committee: 11 members including patient group representation National Representative Board: 34 countries from all continents

3 The Emerging g Regions Support and Partnership (ERSAP) Program ERSAP Preceptorship Program ERSAP Virtual Education Program Difficult Cases in CML - online discussion forum ERSAP Diagnosis and Testing Program Pediatric CML Community

4 The Emerging g Regions Support and Partnership (ERSAP) Program Enhancing clinician s knowledge, sharing best practice and improving the access to diagnosis and testing facilities in the emerging regions where this is most needed

5 ERSAP Preceptorship p Program Facilitate the sharing of best practice treatment between CML Centres of excellence and hematologists from Emerging Regions Through the ERSAP Preceptorship Program the icmlf seeks to improve the resources and knowledge of physicians treating patients with CML in emerging regions. The icmlf select hematologists for the program whose attendance is expected to provide most benefit in this CML community Clinicians undertake an intensive educational program to enhance clinical i l knowledge and skills in the treatment of CML. Preceptors are part of the clinical team at the host site for the duration of the preceptorship, participating in seminars and laboratory work where appropriate

6 A successful u first year Preceptorships at 5 CML centres of excellence: Positive Feedback Highly valued CML education, advancing knowledge of testing, increased overall hematology knowledge, networking for future support Preceptorships at 8 CML centres of excellence Australia Tim Hughes, France - Francois Mahon, Italy Michele Baccarani, Spain - Juan Luis Steegman, UK Jane Apperley, UK - Richard Clarke, USA Jorge Cortes, USA Michael Mauro Preceptorships last 3-4 weeks

7 Feedback from Preceptors Before the start of my preceptorship program, I had many issues related to CML management in my mind. I am happy that I am now enlightened about the management of CML after completion of my preceptorship. I also learnt the results of (early) therapy with Imatinib mesylate are better as compared to patients who are diagnosed in late chronic phase. Majority of our patients present in late chronic phase. Thus, an awareness campaign needs to be launched among primary care physicians who are the initial contacts of these patients. My main focus in next few months would be to initiate some kind of awareness campaign about early diagnosis and referral among primary care physicians. (an) area for research would be to find out if the biology of CML is different in our set up of patients. We see comparatively younger patients of CML (median age years) as compared to west (median age years). It is also possible that the molecular biology and resistance mechanism to imatinib might be different in our patients. Myself and Dr. Michael Mauro are in the process of writing a research protocol on this aspect.

8 Feedback from Preceptors I have clarity in my mind on how to proceed with management of patients who become resistant to first line tyrosine kinase inhibitors and even those who are resistant to second-line TKIs. I also fully understand the concept of BCR-ABL mutations, how they are determined and how to manage patients with these acquired mutations. I think the most beneficial aspect of the preceptorship was monitoring of disease status of patients with CML. All the patients were being monitored by Quantitative BCR ABL and this is one thing patients in Pakistan cannot afford. However it was very useful to learn both the clinical and laboratory aspects of Quantitative BCR ABL and I think this will certainly improve the management of our patients. The overall organization of the program is good. The trip was smooth and the reception was perfect. It was an honor and a pleasure to have participated in this training, despite the vast difference between these institutions and hospitals in developing countries. It is certain that all is not feasible to us but we can certainly learn to improve our management.

ERSAP Virtual Education Program To implement an initiative in which CML key

treatment of CML in developing countries, with special attention to adaptability

Presentations from leading KOLs on the best practice management of CML Includes

access to monitoring and supplemental treatments Webcasts hosted on the icmlf

distributed to physicians in developing countries for low impact viewing and

Foundation While this initiative was conceived for the benefit of hematologists

9 ERSAP Virtual Education Program To implement an initiative in which CML key opinion leaders share best practices and knowledge with physicians, relevant to treatment of CML in developing countries, with special attention to adaptability to low tech environments. Presentations from leading KOLs on the best practice management of CML Includes a session specifically addressing issues of CML care in countries with limited access to monitoring and supplemental treatments Webcasts hosted on the icmlf website The presentations will be available on electronic USB devices and distributed to physicians in developing countries for low impact viewing and information sharing This program was developed in partnership with The Max Foundation While this initiative was conceived for the benefit of hematologists in emerging regions the presentations include the latest information on the best practice management of CML patients and are suitable for clinicians in all countries

10 ERSAP Diagnosis and Testing Program Increasing access to equipment and facilities to enhance the diagnosis and monitoring of CML patients thus improving potential outcomes. Hematologists in emerging regions are often limited in their best practice management of CML due to a lack of affordable testing facilities Increasing the capability of physicians in emerging regions to diagnose and monitor patients with CML by PCR will increase the access of patients to effective therapy throughout the course of their disease In 2011 the icmlf will offer a limited number of grants to hematology centres in emerging regions These grants will be awarded on evaluation of submitted proposals that clearly demonstrate how the funded activity will improve access to CML diagnosis and testing The grants will provide funding of up to a maximum of US $10, per grant along with additional support from a partnering CML centre of excellence Centres in emerging regions will have the flexibility to run the program according to their local situation with the ongoing support of a CML centre of excellence

11 The icmlf Online Providing access to CML expertise, knowledge and support for clinicians around the world

12 Difficult Cases in CML - online discussion forum An ask the expert online forum to share and enhance best practice management of CML globally CML experts and interested t clinicians i i discuss difficult or interesting ti CML patient t cases Clinicians submit a brief history of the patient and the case for discussion. Each clinical case is forwarded to the icmlf expert clinical panel for a brief independent response. Further discussion is then solicited The suggested audience for this forum is clinicians treating CML. Other interested individuals can view and make comments on the forum as long as their qualifications are included with any comment Launched Jan 2011 In the first 4 weeks 6 cases have received 17 replies and 1,000 viewings In 3 months, 11 cases, 28 replies, over 5,600 views

Pediatric CML Community Facilitate the sharing

pediatric CML patients An online community for

current data and publications Discussion forum

Opportunities for collaboration and data sharing

13 Pediatric CML Community Facilitate the sharing of knowledge and data for clinicians with pediatric CML patients An online community for pediatric CML Activities include: Access to current data and publications Discussion forum for hematologists with pediatric CML patients Opportunities for collaboration and data sharing Launched Feb 2011 in collaboration with the CML Advocates Network

14 org

ANNUAL REPORT IMPROVE EDUCATION INCREASE DIAGNOSTICS ENHANCE SURVIVAL

ANNUAL REPORT IMPROVE EDUCATION INCREASE DIAGNOSTICS ENHANCE SURVIVAL ANNUAL REPORT 2017 2018 IMPROVE EDUCATION INCREASE DIAGNOSTICS ENHANCE SURVIVAL Contents 6 Welcome from the Chairman 8 Governance Focus on the Emerging Economic Regions 10 Forum for Physicians from Emerging