International Research Workshop
2023 DTRF International Desmoid Tumor Research Workshop
Friday, September 22, 2023
The DTRF International Desmoid Tumor Research Workshop is part of the DTRF Together We Will Weekend, taking place in Philadelphia, PA. Register for the Weekend here.
Designed for researchers and medical professionals, this critically important, collaborative workshop is a meeting of some of the brightest minds in desmoid tumor research from a variety of disciplines. The Research Workshop not only facilitates new collaborations in research, but also helps DTRF identify research priorities for the coming years. We are sincerely grateful to our attendees who play a key role in advancing the field of desmoid tumor research.
2022 DTRF International Desmoid Tumor Research Workshop(VIRTUAL via Zoom)
In September 2022, we hosted our International Research Workshop virtually, and in conjunction with our Together We Will Virtual Weekend, which featured events for medical professionals, patients and care partners. Over ~160 physicians and researchers signed up for the 2022 Research Workshop, expanding our worldwide participation to ~100 institutions from 30 countries.
AGENDA
Welcome: Jeanne Whiting, Executive Director and Co-Founder, The DTRF and Benjamin Alman, MD, Professor & Chair, Orthopaedic Surgery, Duke University
Kris Vleminckx, PhD, Professor of Developmental Biology, Ghent University – “Investigating EZH2 as a druggable mediator of immune cell exclusion in desmoid tumors.”
Paul Huang, PhD, Head, Molecular and Systems Oncology Laboratory, Division of Molecular Pathology, The Institute of Cancer Research – “The proteomic landscape of desmoid tumours.”
Joanna Przybyl, PhD, Assistant Professor, Department of Surgery, McGill University & Principal Investigator, Cancer Research Program, Research Institute at The McGill University Health Centre – “Targeting hexosamine biosynthesis pathway for the treatment of desmoid tumors.”
Jesse Boehm, PhD, Chief Science Officer, Break Through Cancer; Principal Investigator, MIT, affiliated researcher, Broad Institute – “Progress Towards a Desmoid Tumor Dependency Map.”
Gerlinde Wernig, MD, Assistant Professor, Department of Pathology, Stanford University School of Medicine and Cristabelle Madona De Souza, PhD, Postdoctoral Fellow, Department of Pathology, Stanford University – “Studying CD47 blockade as an immunotherapy for desmoid-type fibromatosis.”
Jason Ortwerth, Desmoid Tumor Patient Advocate
Alessandro Gronchi, MD, Chair of Sarcoma Service – Department of Surgery, Fondazione IRCCS Istituto Nazionale dei Tumori (National Cancer Institute)– “Prospective observational study of active surveillance in primary desmoid fibromatosis.”
Anne-Rose Schut, MD, Surgical Oncology and Medical Oncology, Erasmus Medical Center Cancer Institute – “Unraveling Desmoid-Type Fibromatosis-specific Health-Related Quality of Life: Who Is at Risk for Poor Outcomes.”
Ty Subhawong, MD, Associate Professor of Clinical Radiology, and Vice-Chair for Research, Department of Radiology, The University of Miami Miller School of Medicine – “MRI T2 mapping in desmoid tumors: a quantitative imaging biomarker of tumor response with high inter-reader reliability.”
Aimee Crago, MD, PhD, FACS, Associate Attending Surgeon, Memorial Hospital, Memorial Sloan Kettering Cancer Center/ Associate Professor, Weill Cornell Medical Center – “Growth factor signaling and kinase inhibitors regulate oncogenesis in desmoid fibromatosis by modulating activity of the beta-catenin transcription target ABL1.”
Philippos Costa, MD – “Comparative Effectiveness of Systemic Treatments in Desmoid Tumors.”
Benjamin Wilke, MD, Assistant Professor and Senior Associate Consultant in the Department of Orthopedic Surgery at Mayo Clinic – “Pilot Study of Intralesional Injection of Triamcinolone Acetonide for Desmoid Tumors.”
Ravin Ratan, MD, Associate Professor, Sarcoma, MD Anderson Cancer Center – “Nirogacestat for the Treatment of Desmoid Tumors.”
Rashmi Chugh, MD, Professor of Internal Medicine in the Division of Hematology/Oncology, Department of Internal Medicine, University of Michigan Rogel Comprehensive Cancer Center – “Initial Results of Phase ⅔ Trial of AL102 for Treatment of Desmoid Tumors (DT).”
Diana Shuster, PhD, Senior Director of Clinical Pharmacology, Recursion Pharmaceuticals – “TUPELO TRIAL: A Phase 2, Multicenter, Randomized, Double-Blind, Placebo- Controlled Trial to Evaluate Efficacy, Safety, and Pharmacokinetics of REC4881 in Subjects with Familial Adenomatous Polyposis (FAP) Study Design.”
Closing: Jeanne Whiting, Executive Director and Co-Founder, The DTRF and Benjamin Alman, MD, Professor & Chair, Orthopaedic Surgery, Duke University
2021 DTRF International Desmoid Tumor Research Workshop(VIRTUAL via Zoom)
In September 2021, we hosted our International Research Workshop virtually, and in conjunction with our Together We Will Virtual Weekend, which featured events for medical professionals, patients and care partners. Over ~170 physicians and researchers signed up for the 2021 Research Workshop, expanding our worldwide participation to ~100 institutions from 30 countries.
AGENDA
Welcome: Jeanne Whiting, President and Co-Founder, DTRF.
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Benjamin Alman, MD, Professor & Chair, Orthopaedic Surgery, Duke University, and Maneesh Kumar, MD, PhD, Research Director, DTRF Coordinating Center, Welcome/DTRF Updates.
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Yoshihiro Nishida, MD, Rehabilitation & Orthopedic Oncology, Nagoya University Graduate School of Medicine, “Diagnostic and therapeutic strategies for extra-abdominal desmoid-type fibromatosis: a longitudinal questionnaire survey to specialized centers in Japan.” ABSTRACT
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Hyo Song Kim, MD, Department of Internal Medicine, Yonsei University, “Genomic and transcriptomic analysis of desmoid tumor reveals enrichment of transforming growth factor beta responsive signature.” ABSTRACT
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Afshin Gangi, MD, PhD, Strasbourg’s University Hospitals, “Evaluation of the Cryodestruction of Non- Abdominopelvic Desmoid Tumors in Patients Progressing despite Medical Treatment (CRYODESMO01).”
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Nicholas Penel, MD, PhD, Director of Clinical Research & Innovation Dept/ Head of General Oncology in Medical Oncology, Oscar Lambret Cancer Centre. “Prognosis value of S45F mutation of CTNNB1 in desmoid-type fibromatosis (DF). Prospective analysis of 500 consecutive patients (pts) from ALTITUDES Trial.” ABSTRACT
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Sara Coppola, MD, Sarcoma Department, IEO Istituto Europeo di Oncologia, “Abdominal Desmoid Tumors: A series from a single institution.” ABSTRACT
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Ed Neilan, MD, PhD, Chief Medical Officer, NORD, “Data sharing and RDCA-DAP.”
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KEYNOTE: Stefani Spranger, PhD, Assistant Professor of Biology, Massachusetts Institute of Technology, “Not all anti-tumor T cell responses are created equal.”
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Kris Vleminckx, PhD, Professor of Developmental Biology, Ghent University, “Investigating the mechanisms and tumor-host interactions mediating desmoid tumor regression by EZH2 inhibition in CRISPR-based Xenopus tropicalis models.” ABSTRACT
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Gerlinde Wernig, MD, Assistant Professor, and Cristabelle De Souza, MD, Postdoctoral Fellow, Department of Pathology, Stanford University, “Evaluating CD47 blockade as a potential immunotherapy for desmoid-type fibromatosis.” ABSTRACT
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Mushriq Al-Jazrawe, PhD, Post-doctoral Associate, The Broad Institute of MIT and Harvard, “Developing a physiologically relevant target validation platform for desmoid tumors.” ABSTRACT
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Daniela Segat, PhD, Researcher, “Mauro Baschirotto” Institute for Rare Diseases – BIRD Foundation, “CRISPR/Cas9 approach for creating a simplified cellular model to study the Desmoid cells in response to external stimuli and in cellular communication.” ABSTRACT
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Ludmilla Thome Domingos Chinen, PhD, Senior researcher, Pesquisadora Hospital ACCamargo- Fundação Antônio Prudente, “Circulating tumor cells in desmoid tumors.” ABSTRACT
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Sameer Rastogi, MD, Associate Professor, Dept. of Medical Oncology, All India Institute of Medical Sciences (AIIMS), New Delhi, “Patient-reported outcomes in patients with desmoid type fibromatosis.” ABSTRACT
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Sukanya Subramanian, MD, Transplant Gastroenterologist, Medstar Georgetown University Hospital, “Intestinal transplant as rescue therapy.” ABSTRACT
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Ana Oton, MD, VP of Medical Affairs, Nirogacestat Program, SpringWorks Therapeutics, “An Update on the Phase 3 DeFi Trial Evaluating Nirogacestat in Adult Patients with Progressing Desmoid Tumors.” ABSTRACT
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Amanda Hoffman, Desmoid Patient Advocate
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Gary Gordon, MD, PhD, Chief Medical Officer, and Jason Kaplan, MD, Medical Director, Ayala Pharmaceuticals, “AL102, Investigational Oral Gamma-Secretase Inhibitor for the Potential Treatment of Desmoid Tumors.” ABSTRACT
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Jessica White, PhD student, SpringWorks Therapeutics, Inc., “The Epidemiology of Desmoid Tumors in Denmark.” ABSTRACT
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Anne-Rose Schut, MD, PhD candidate, Surgical Oncology and Medical Oncology, Erasmus Medical Center Cancer Institute, “The evaluation of health-related quality of life issues experienced by patients with desmoid-type fibromatosis (The QUALIFIED STUDY).” ABSTRACT
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Kelly Mercier, PhD, Principal Investigator, DTRF Patient Registry & Chair, DTRF Coordinating Center, “DTRF’s Natural History Study.” ABSTRACT
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Rebecca Gladdy, MD, PhD, Associate Professor, General surgery, University of Toronto, “Role of Multidisciplinary Care in Complex Desmoids.”
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Chandrajit Raut, MD, MSc, Professor of Surgery, Harvard Medical School Chief, Division of Surgical Oncology, Department of Surgery, Brigham and Women’s Hospital Surgery Director, Center for Sarcoma and Bone Oncology, Dana-Farber Cancer Institute, “The International Pregnancy Study.”
2020 DTRF International Desmoid Tumor Research Workshop (VIRTUAL via Zoom)
AGENDA
Welcome: Jeanne Whiting,, President and Co-Founder, DTRF.
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Benjamin Alman, MD, Professor & Chair, Orthopedic Surgery, Duke University, “Mouse models in desmoid tumors.”
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Jesse Boehm, PhD, Scientific Director of the Cancer Dependency Map, Associate Director of the Cancer Program, Director of the Broad Cancer Model Development Center, The Broad Institute of MIT and Harvard, “The Desmoid Tumor Dependency Map.” ABSTRACT
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Kris Vleminckx, PhD, Professor of Developmental Biology, Ghent University, “Identifying and characterizing dependency factors in a genetic Xenopus tropicalis desmoid tumor model.” ABSTRACT
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Paul Huang, PhD, Head, Molecular and Systems Oncology Laboratory, Division of Molecular Pathology, The Institute of Cancer Research, “Deconstructing the desmoid tumour matrisome.” ABSTRACT
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Kelly Mercier, PhD, Adjunct Associate, Duke University; Medical Science Liaison, Jazz Pharmaceuticals, Inc., “Stable isotope resolved metabolomics to interrogate the interactions between stroma and desmoid tumors.” ABSTRACT
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Joanna Przybyl, PhD, Instructor, Department of Pathology, Stanford University, “Genome-wide DNA methylation profiling of desmoid tumors.” ABSTRACT
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Gerlinde Wernig, MD, Assistant Professor, Department of Pathology, and Tristan Lerbs, PhD, Post doctoral Researcher, Stanford University School of Medicine, “Jun and its Connections with Wnt and Notch.” ABSTRACT
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Anne-Rose W Schut, MD, PhD candidate, Surgical Oncology, Erasmus Medical Center Cancer Institute, “The mechanism of Sorafenib in desmoid-type fibromatosis.” ABSTRACT
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Javier Martin Broto, MD, PhD, Instituto de Biomedicina de Sevilla (IBIS), “Activity of taxanes in progressive or symptomatic desmoid tumors.” ABSTRACT
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Breelyn A. Wilky, MD, Associate Professor, University of Colorado Anschutz Medical Campus, “Association of CTNNB1 mutation subtypes with responses to systemic therapy in patients with desmoid tumors.” ABSTRACT
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Christina Kosyla, Desmoid tumor patient and advocate.
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Sameer Rastogi, MD, Medical Oncologist, All India Institute of Medical Sciences, “Desmoid fibromatosis management in tertiary care center in India- Lessons learned.” ABSTRACT
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Aaron Weiss, DO, Associate Professor of Pediatrics, Maine Medical Center (Chair, DTRF Medical Advisory Board), “The DTRF Virtual Tumor Board.” ABSTRACT
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Kelly Mercier, PhD, Adjunct Associate, Duke University; Medical Science Liaison, Jazz Pharmaceuticals, Inc., “The DTRF Natural History Study.” ABSTRACT
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Chen Duksin, MD, MBA, Executive Medical Director, Ayala Pharmaceuticals, “AL102, Oral Gamma-Secretase Inhibitor for the Treatment of Patients Living with Desmoid Tumors.” ABSTRACT
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Fariba Navid, MD, Associate Professor at the Keck School of Medicine and Medical Director of Clinical Research Support Office for the Cancer and Blood Disease Institute at Children’s Hospital Los Angeles, “ARST1921: A Safety Pharmacokinetic and Efficacy Study of a y-Secretase Inhibitor, Nirogacestat (PF-03084014), in Children with Adolescents with Progressive, Unresectable Desmoid Tumors.” ABSTRACT
Abha Gupta, MD, MSc, FRCPC, Associate Professor, Department of Pediatrics, University of Toronto; Staff Oncologist, Solid Tumour Program, The Hospital for Sick Children; Staff Oncologist, Sarcoma Program, Princess Margaret Cancer Centre; Medical Director, Adolescent and Young Adult Program, PMCC, “High Prevalence of Persistent Emotional Distress in Aggressive Fibromatosis.”
- David Kirsch, MD, PhD, Barbara Levine University Professor and Vice Chair for Basic & Translational Research, Department of Radiation Oncology Professor, Department of Pharmacology & Cancer Biology, Duke University, “Using radiation therapy to treat desmoid tumors.” Abstract | Presentation
- Tom van Cann, MD, Medical Oncologist, KU Leuven, “Systemic treatment preferences for patients with advanced desmoid-type fibromatosis in Europe.” Abstract
- Milea J.M. Timbergen, MD, PhD candidate, Erasmus Medical Center, “Results of the interim analysis of the Dutch GRAFITI study.” Abstract | Presentation
- Breelyn Wilky, MD, Assistant Professor in Hematology/Oncology, University of Miami Sylvester Comprehensive Cancer Center, “Mutation phenotypes and their responses to chemotherapy.”
- Chiara Colombo MD, Surgical Oncology, Fondazione IRCCS- Instituto Tumori di Milano, “β -catenin in Desmoid-Type Fibromatosis: deep insights on the role of T41A and S45F mutations on protein structure and gene expression.”
- Danielle Braggio, PhD, Post-Doctoral Researcher, Ohio State University, “Autophagy inhibition overcomes sorafenib resistance in S45F-mutated desmoid tumors.” Abstract | Presentation
- Yoshihiro Nishida, MD, PhD, Associate Professor, Nagoya University Graduate School of Medicine, “Effects of mechanical forces on the cell behavior of desmoid-type fibromatosis.” Abstract
- Kris Vleminckx, PhD, Professor, Department of Molecular Biomedical Research Unit of Developmental Biology VIB, Ghent University, “Therapeutic target identification in a Xenopus model for desmoid tumor formation – an update.” Abstract
- Gerlinde Wernig, MD, Assistant Professor of Pathology, Stanford University, “Unifying mechanism of different fibrotic diseases.”
- Sant Chawla, MD, FRACP, Medical Director, Sarcoma Oncology Research Center, “Designing new clinical trials in desmoid tumor.” Presentation
- Steve Horrigan, PhD, Chief Scientific Officer, Beta Cat Pharmaceuticals, “Tegavivint (BC2059) – A new way of attacking beta-catenin driven disease.”
- Danielle Braggio, PhD, Post-Doctoral Researcher, Ohio State University, “Tegavivint (BC2059) studies in desmoid cell lines.”
- Benjamin Alman, MD, Professor and Chair, Department of Orthopedic Surgery, Duke University, “Tegavivint (BC2059) studies in Apc(+)/Apc(1638N) genetic mouse model of aggressive fibromatosis.”
- Casey Cunningham, MD, Chief Medical Officer, Beta Cat Pharmaceuticals, “Synopsis of a Planned Phase 1/2 Study of Tegavivant (BC2059) in desmoid tumors.” Abstract
- Benjamin Alman, MD, Professor and Chair, Department of Orthopedic Surgery, Duke University, “Introduction and report on Collaboration for a Cure project.” Presentation
- Kelly Mercier, PhD, Research Scientist in Metabolomics, RTI International, “A metabolomics pilot study on desmoid tumors and novel drug candidates.” Abstract
- Gary Schwartz, MD, Chief, Division of Hematology/Oncology, Columbia University, “A systems biology approach to the identification of new treatments for patients with soft tissue sarcomas including desmoid tumors.”
- Aaron Weiss, DO, Assistant Clinical Professor of Pediatrics, Maine Medical Center, “Development of a DTRF-sponsored virtual tumor board.” Abstract | Presentation
- Kelly Mercier, PhD, Research Scientist in Metabolomics, RTI International, “DTRF Natural History Study and patient registry launch and update.” Abstract
- Benjamin Alman, MD, Department Chair, Orthopedic Surgery, Duke University, “Introduction and Report on Collaboration for a Cure project.”
- Kris Vleminckx, PhD, Professor of Developmental Biology, Ghent University “Identifying targets for therapy in a novel genetic Xenopus model for desmoid tumor formation.” Abstract
- Stephen Horrigan, PhD, Chief Scientific Officer, BetaCat Pharmaceuticals
“Tegatrabetan (BC-2059) – A new approach to targeting beta catenin and Wnt activation.” Abstract
- Danielle Braggio, PhD, Post-Doctoral Researcher, Ohio State University
“Initial studies of Tegatrabetan (BC-2059) in desmoid tumor cell strains.” Abstract
- Mrinal Gounder, MD, Assistant Professor and Medical Oncologist, Memorial Sloan Kettering Cancer Center,
“Development of PRO tool in desmoid tumors.”
- Steven Attia, DO, Assistant Professor of Oncology, Mayo Clinic
“A model for international, multi-institutional, multi-disciplinary sarcoma videoconferencing.” Abstract
- Nicholas Penel, MD, PhD, Medical Oncology, Centre Oscar Lambret
“The French Patient Registry Project.” Abstract
- Danique van Broekhoven, MD, Surgical Oncology, Erasmus MC “Outcome of non-surgical management of extra-abdominal and abdominal desmoid-type fibromatosis: a population based study.” Abstract
- Matt van de Rijn, MD, PhD, Professor, Department of Pathology, Stanford University Medical Center,
“Gene expression profiling of desmoid tumors.”
- Danielle Braggio, PhD, Post-Doctoral Researcher, Ohio State University
“Investigation of antitumor effects of sorafenib on desmoid tumors.” Abstract
- Lara Sullivan, MD, MBA, Vice President, Pfizer CURES, Pfizer, Inc., “Update on clinical trials on Pfizer compound/ a potential new treatment.”
- Peter Hohenberger, MD, Mannheim University Medical Center
“An analysis of incidence and significance of trauma prior to desmoid tumor formation.” Abstract
- Nancy Cho, MD, Assistant Professor of Surgery, Harvard Medical School
“Targeting hyaluronic acid in desmoid tumors.” Abstract
- Chiara Colombo, MD, Surgical Oncology, Instituto Tumori di Milano
“Whole Exome Sequencing in patients under Wait & See (W&S): a preliminary analysis.” Abstract
- Daniela Segat, PhD, Senior Researcher, ”Mauro Baschirotto” Institute for Rare Diseases – B.I.R.D. Foundation,
“In vitro studies of the microenvironmental factors responsible of the proliferation and aggressiveness of desmoid tumor cells.” Abstract | Presentation
- Benjamin Alman, MD, Department Chair, Orthopedic Surgery, Duke University, Introduction and Report on Collaboration for a Cure project.
- Alexander Lazar, MD, PhD, Director, Department of Pathology, MD Anderson Cancer Center Selective (Soft Tissue) Pathology Fellowship Training Program, “CTNNB1 Genotyping in Desmoid Tumors: Where Do We Stand?”
- Danielle Braggio, PhD, Post-Doctoral Researcher, Ohio State University, “Reactivation of apoptosis as a potential therapeutic target for desmoid tumors with CTNNB1 S45F mutation.”
- Radhika Atit, PhD, Associate Professor, Case Western Reserve University Dept of Biology, Case Western Reserve University, “Sustained β-catenin activity in dermal fibroblasts promotes fibrosis by regulating extracellular matrix protein-coding genes.”
- Meredith K. Chuk, MD, Scientific Liaison for Sarcoma, Medical Officer, FDA, “A review of FDA draft guidance–Rare Diseases: Common Issues in Drug Development.”
- Yoshihiro Nishida, MD, PhD, Chairperson, Associate Professor Dept. of Orthopaedic Surgery, Nagoya University, “Planned simple resection for selected patients with extra-peritoneal desmoid tumors.”
- Alice Chen, MD, Investigational Drug Branch, NCI- NIH, “Phase II trial of PF-03084014 in adults with desmoid tumors/aggressive fibromatosis.”
- Raphael Pollock, MD, PhD, Professor of Surgery; Director, Division of Surgical Oncology, Ohio State University Comprehensive Cancer Center, “Targeting the Notch Pathway: A Potential Therapeutic Approach for Desmoid Tumors.”
- Mrinal Gounder, MD, Assistant Professor and Medical Oncologist at Memorial Sloan Kettering Cancer Center, Notch Inhibition in Desmoids: “Sure It Works in Practice, but Does it Work in Theory?”
- Bernd Kasper, MD, PhD, Professor, Mannheim University Medical Center, Interdisciplinary Tumor Center, Sarcoma Unit, “Clinical and translational research results of a phase II study evaluating imatimib to induce progression arrest in RECIST progressive desmoid-type fibromatosis – A study of the German Interdisciplinary Sarcoma Group (GISG-01).”
- Mushriq Al-Jazrawe, PhD Candidate, University of Toronto, Laboratory Medicine & Pathobiology, “Single cell-derived clonal analysis of desmoid tumors.”
- Kelly Mercier, PhD, Research Chemist, Systems and Translational Science, NIH, Eastern Regional Comprehensive Metabolomics Core (RTI RCMRC), “Metabolomics: Moving Towards A Better Understanding of Desmoid Tumors.”
- Ty Subhawong, MD, Musculoskeletal Radiology, Assistant Professor of Radiology University of Miami, “MRI features of response in systemic therapy for aggressive fibromatosis.”
- Brigham & Women’s Hospital
- Duke University
- Fondazione IRCCS Istituto Nazionale dei Tumori
- Lunenfeld-Tanenbaum Research Institute
- MD Anderson Cancer Center
- Memorial Sloan-Kettering Cancer Center
- Mount Sinai Hospital, Toronto
- National Cancer Institute (NCI)
- National Institutes of Health (NIH)
- Netherlands Cancer Institute
- Ohio State Comprehensive Cancer Center
- Stanford University
- University of Miami
- University of Toronto
- U.S. Food and Drug Administration (FDA)
- Vanderbilt University
- Wake Forest University
