�� New Research Project to Identify Best Treatment Options �������������������������������������������������������������������� ������������������������������������ Patients and caregivers throughout the country will observe this July as Sarcoma Awareness Month. Numerous events have been planned to raise the national consciousness about what we can all do to promote scientific, philanthropic, and grass roots involvement in finding effective treatment strategies for sarcomas. In November 2007, 20 advocates met at the Connective Tissue Oncology Society meeting in Seattle to build cooperation among sarcoma nonprofits. We agreed that July should be designated Sarcoma Awareness Month. An alliance of sarcoma physicians supported us. Since 2007 efforts have continued to get a resolution introduced in Congress to establish July as Sarcoma Awareness Month. Perhaps this is the time for Congress to demonstrate it can come together and pass a resolution that transcends politics. As these events are launched this July, it is also a good time to reflect on the efforts of patient advocacy groups nationwide and furthermore at the local level where they involved in a broad spectrum of initiatives to fund research and provide the kinds of services—both in terms of online information and community outreach— that are invaluable for patients and families struggling to cope with sarcomas. And community is what it’s all about—building in an incremental but nevertheless significant way the kinds of commitment and sharing of values strengthening the bond between patients, their families and caregivers. This network of support is a challenge to build but my experience with the Life Raft Group suggests how patient advocacy groups can reach a higher level of service. And it can be achieved from the modest beginnings almost every patient advocacy group has experienced as they gradually “bootstrap” their way to a larger and more comprehensive agenda. Consider, for example, the Registry of the LRG. The Life Raft Group Patient Registry has over 15 years of self-reported and clinical data encompassing 35 years of patient history crossing institutional boundaries. The Patient Registry has 1703 patients from 67 countries, with the youngest patient diagnosed at 5 and the oldest at 92 and represents 12 different mutational types. This is an extraordinary effort of collaboration and compilation, a testament to the diligent gathering of data. As the LRG notes on its description of the Registry: “We have created a unique Patient Registry. All of our information comes directly from patients or caregivers. Using this data we examine questions that are not being answered quickly enough by current trials or that are not being looked at in clinical trials. We also monitor the latest treatments for early indications of a response. We look for treat- Editorial Mission The GIST and Sarcoma Journal is intended to serve as a comprehensive and authoritative resource of scientifically valid information for physicians and allied health care professionals regarding advances in the diagnosis and treatment of gastrointestinal stromal tumors and other sarcomas. Editorial content focuses on the impact of translational research in oncology and gastroenterology relating specifically to GIST and sarcomas. As the official medical journal of the Life Raft Group, it also provides a forum for GIST and sarcoma patient advocacy. The GIST Sarcoma Journal is circulated to all medical oncologists and other selected medical professionals, and is available to members of the GIST and sarcoma community upon request. The Life Raft Group The mission of the Life Raft Group is to ensure the survival of GIST patients through a comprehensive approach connecting individual patients’ needs, the worldwide community of GIST advocates and the global health and research environment. To do this, the group focuses on three key areas: research, patient support and education, and advocacy. (For additional information, please go to www.liferaftgroup.org) Editor-in-Chief Jonathan C. Trent, MD, PhD Co-Director, Musculoskeletal Center Director, Sarcoma Medical Research Program Professor of Medicine University of Miami Sylvester Comprehensive Cancer Center Miami, Florida Medical Advisory Board Peter Reichardt, MD, PhD Head of the Department of Interdisciplinary Oncology Director of the Sarcoma Center Berlin Brandenburg Director, Cancer Center Berlin-Buch at HELIOS Klinikum Berlin-Buch Berlin, Germany Matias Chacón, MD Medical Oncologist Instituto Médico Alexander Fleming Buenos Aires, Argentina Michael C. Heinrich, MD Professor of Medicine (hematology and medical oncology) Oregon Health and Science University School of Medicine and the Portland Veterans Affairs Medical Center Portland, Oregon Andrew E. Rosenberg, MD Professor of Pathology, Director of Bone and Soft Tissue Pathology and Director of Surgical Pathology at the University of Miami Miami, Florida Yoon-Koo Kang, MD, PhD Professor of Medicine Department of Oncology, University of Ulsan College of Medicine, Asan Medical Center, Seoul, South Korea Gary K. Schwartz, MD Chief, Division of Hematology and Oncology Columbia University Medical Center New York, New York Nurse Advisory Board Monica Davey, RN BSN MEd MBA CCRP Clinical Research Coordinator-Manager Fox Chase Cancer Center Philadelphia, Pennsylvania Loretta (Lori) A. Williams, PhD, RN Assistant Professor Department of Symptom Research The University of Texas MD Anderson Cancer Center Houston, Texas The Life Raft Group 155 Route 46 West, Suite 202 Wayne, NJ 07470 USA Phone 973-837-9092 ; Fax 973-837-9095 E-mail liferaft@liferaftgroup.org Publishing Staff Stu Chapman, Executive Editor and Publisher Jenny Chapman, Assoc. Director, Editorial Services Gloria Catalano, Production Director Michael McClain, Design Director Editorial Office GUP Associates 2557 Tulip Street Sarasota, FL 34239 Tel: (516) 356-5006 Copyright 2017 GUP Associates. All rights reserved. None of the contents may be reproduced in any form without the permission of the publisher. About the cover A large-scale genomic analysis has found that patterns of genetic changes detected in blood samples such as one depicted here, or called liquid biopsy, closely mirror those identified in traditional tumor biopsy. (Copyright, Science Source photo) ���������������������������������� �������������������������� (continued on bottom of page 12) in Advanced GIST �� National Leiomyosarcoma Foundation Empowers Patients ���� Liquid Biopsy May Guide Treatment Decisions for Sarcomas ���� Case Presentation: ctDNA to Monitor Disease Progression in Spindle Cell Sarcoma
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