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While over 500 of us were at DTRF's Running for Answers 5K, doctors and researchers from around the world were collaborating and setting research priorities at our Second International Desmoid Tumor Research Workshop in Philadelphia.
We hosted approximately forty researchers from the U.S., Germany, Finland, Japan, Cananda, Italy and England, as well as representatives from the FDA, Pfizer and Bayer.
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DTRF was pleased to welcome approximately 200 attendees to the Patient Meeting this year. Below is the list of speakers and the topics addressed.
Benjamin Alman, MD, Department Chair, Orthopedic Surgery, Duke University, "Collaboration for a Cure: What We've Learned So Far."
- provided updates on Collaboration for a Cure, where 5 promising drugs will continue to be tested.
Aimee Crago, MD, PhD, Assistant Attending Surgeon, Memorial Sloan Kettering Cancer Center, "Personalizing Management of Desmoid Tumors."
- highlighted the importance of personalizing the treatment and management of desmoid tumors from patient to patient.
Jean Paty, Principle, Advisory Services, Endpoint Strategy Lead, Quintiles
Erin Tomaszewski , MPH, Principal Consultant, Quintiles Advisory Services
Amylou Dueck, Head of Biostatistics in Health Sciences Research Division, Mayo Clinic
Panel Discussion on Patient- Reported Outcomes
- introduced a project to develop a Patient Reported Outcome (PRO) tool
Bernd Kasper, MD, PhD, Mannheim University Medical Center, Interdisciplinary Tumor Center, Sarcoma Unit, "The European Experience."
- discussed a European consensus paper on desmoid tumor treatments
Vinay Puttanniah, MD, Director of Regional Anesthesia, Memorial Sloan Kettering Cancer Center, "Pain Management."
- addressed pain management for desmoid tumors
Kishore Iyer, MBBS, FRCS (Eng), FACS, Professor of Surgery and Pediatrics, Mount Sinai Medical Center, "Challenging Conventional Limits of Inoperability in Abdominal Desmoids and Sarcomas."
- spoke about a surgical approach to "nonresectable" tumors in the mesentary
Robert Lefkowitz, Associate Professor, Radiology, Weill Cornell Medical College/ Memorial Sloan Kettering Cancer Center, "MR Imaging of Desmoid Tumors."
- explained why a tumor may be reported as stable but in actuality treatment is changing the tumor density and size.
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"I am blown away by the amount of work that you have already undertaken."
"The annual meeting provided a recent reminder of how powerful an initiative is DTRF. The international collaboration and support is awe-inspiring."
"This is the highlight of my year. The highlight of my year. I am so happy and I'll never miss this again."
"I am so excited, because I will get to meet new friends experiencing the same battle with desmoids."
"The pool of people working on desmoid tumors is growing exponentially and it's your (DTRF's) work that is making this happen."
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The next Patient Meeting and Running for Answers 5K Run/ Kids' Fun Run will take place on September 24 & 25, 2016.
Save the date!
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This email is intended solely to provide general information for your reference only. Any information contained herein is not intended as medical advice for any individual problem, or as a diagnosis, treatment plan, or recommendation for a particular course of action, and should not be used as a substitute for professional medical advice and services. Please do not delay in obtaining professional medical advice regarding your individual circumstances.
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