2020 CCSS Progress Report
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PARTICIPATING CENTERS St. Jude Children's Research Hospital Progress Report Memphis, TN Ann & Robert Lurie Children’s Hospital of Chicago 2020 Chicago, IL Children's Healthcare of Atlanta/Emory University Atlanta, GA Children's Hospital at Stanford Palo Alto, CA Children's Hospital Colorado Aurora, CO Children's Hospital of Los Angeles Los Angeles, CA Children’s Hospital of Orange County Orange, CA Children's Hospital of Philadelphia Philadelphia, PA Children's Hospital of Pittsburgh Pittsburgh, PA Children's Hospitals and Clinics of Minnesota Minneapolis, MN Children's National Medical Center Washington, DC City of Hope National Medical Center Duarte, CA Cook Children’s Hematology-Oncology Center Fort Worth, TX Dana-Farber Cancer Institute/Children’s Hospital Boston, MA Mattel Children’s Hospital at UCLA Los Angeles, CA Mayo Clinic Rochester, MN Memorial Sloan-Kettering Cancer Center NCI-funded resource for outcome New York, NY and intervention research Miller Children's Hospital Long Beach, CA Nationwide Children’s Hospital Columbus, OH U24 CA55727 Riley Hospital for Children - Indiana University Indianapolis, IN Roswell Park Cancer Institute Buffalo, NY Seattle Children's Hospital Seattle, WA St. Louis Children's Hospital St. Louis, MO Texas Children's Hospital Houston, TX Toronto Hospital for Sick Children Toronto, ON UAB/The Children's Hospital of Alabama Birmingham, AL University of California at San Francisco San Francisco, CA University of Chicago Comer Children’s Hospital Chicago, IL University of Michigan - Mott Children's Hospital Ann Arbor, MI University of Minnesota Minneapolis, MN UT-Southwestern Medical Center Dallas, TX http://ccss.stjude.org U.T.M.D. Anderson Cancer Center Houston, TX INFORMATION IN THIS DOCUMENT IS CONFIDENTIAL AND IS NOT INTENDED FOR DISTRIBUTION OR CITATION All data presented in this report are current as of October 1, 2020 Table of Contents CCSS Institutions and Investigators ..................................................................................................... 2 CCSS External Advisory Committee .................................................................................................... 3 Project Organization/Leadership ........................................................................................................ 4 CCSS Cohort Surveys ........................................................................................................................... 5 CCSS Ancillary Studies ......................................................................................................................... 6 Main Characteristics of the Initial, Expansion, and Overall Cohort .................................................... 7 Characteristics of Subsequent Neoplasms in CCSS ............................................................................. 9 Biospecimen Repository by Primary Diagnosis ................................................................................... 10 Characteristics of Biologic Material Available for SMN and Meningioma Cases ................................ 11 Radiation Dosimetry Center Data/Analyses Summary ....................................................................... 12 Applications of Intent to Conduct Research ....................................................................................... 26 Cancer Control and Intervention .................................................................................................. 26 Chronic Disease ............................................................................................................................. 31 Epidemiology/Biostatistics............................................................................................................ 39 Genetics ........................................................................................................................................ 42 Psychology .................................................................................................................................... 46 Second Neoplasms ........................................................................................................................ 52 Statistical Center Project List .............................................................................................................. 55 Publications and Manuscripts ............................................................................................................. 61 Publications by Topic .......................................................................................................................... 87 Presented Abstracts ............................................................................................................................ 95 Investigator‐Initiated, Ancillary Studies for External‐Funding ............................................................ 118 CCSS Request for Proposals for Genome‐Wide Investigation of Late Effects .................................... 133 CCSS Career Development Award Winners ........................................................................................ 135 CCSS Trainee List ................................................................................................................................. 137 CCSS Website Map .............................................................................................................................. 143 LTFU Website Map .............................................................................................................................. 144 Appendix: Sample LTFU Participant Newsletter ................................................................................. 145 Page | 1 CCSS Institutions and Investigators St. Jude Children’s Research Hospital, Memphis, TN Greg Armstrong, MD, MSCE #‡, Melissa Hudson, MD*+‡, Leslie Robison, PhD‡, Daniel Green, MD‡, Kevin Krull, PhD‡, Aaron McDonald, PhD‡, Kiri Ness, PhD‡, Yutaka Yasui, PhD‡ Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL Jennifer Reichek, MD, MSW* Children's Healthcare of Atlanta/Emory University, Atlanta, GA Karen Effinger, MD, MS*, Ann Mertens, PhD‡ Children's Hospitals and Clinics of Minnesota, Minneapolis, MN Katharine Rae Lange, MD* Children’s Hospital Colorado, Denver, CO Brian Greffe, MD*, Michael Arnold, MD, PhD‡ Children’s Hospital Los Angeles, Los Angeles, CA David Freyer, DO, MS* Children’s Hospital of Orange County, Orange, CA Lilibeth Torno, MD* Children’s Hospital of Philadelphia, Philadelphia, PA Jill Ginsberg, MD* Children’s Hospital of Pittsburgh, Pittsburgh, PA Jean Tersak, MD * Children’s National Medical Center, Washington, DC Jennifer Dean, MD* Cincinnati Children’s Hospital Medical Center, Cincinnati, OH Stella Davies, MD, PhD*‡ City of Hope Medical Center, Los Angeles, CA Saro Armenian, DO, MPH*‡ Cook Children’s Medical Center, Ft. Worth, TX Donald Beam, MD* Dana‐Farber Cancer Institute/Children’s Hospital, Boston, MA Lisa Diller, MD*‡ Fred Hutchinson Cancer Research Center, Seattle, WA Wendy Leisenring, ScD*‡ Hospital for Sick Children, Toronto, ON Paul Nathan, MD*‡ Mayo Clinic, Rochester, MN Vilmarie Rodriguez, MD* Memorial Sloan‐Kettering Cancer Center, New York, NY Danielle Friedman, MD*, Charles Sklar, MD‡ Miller Children’s Hospital, Long Beach, CA Jerry Finklestein, MD* National Cancer Institute, Bethesda, MD Nita Seibel, MD‡, William Timmer, PhD‡, Lindsay Morton, PhD‡ Nationwide Children's Hospital, Columbus, OH Randy Olshefski, MD* Riley Hospital for Children, Indianapolis, IN Terry Vik, MD* Roswell Park Cancer Institute, Buffalo, NY Denise Rokitka, MD, MPH* St. Louis Children’s Hospital, St. Louis, MO Robert Hayashi, MD* Seattle Children’s Hospital, Seattle, WA Scott Baker, MD*, Eric Chow, MD, MPH ‡ Stanford University School of Medicine, Stanford, CA Sheri Spunt, MD, MBA* Texas Children’s Hospital, Houston, TX Zoann Dreyer, MD* University of Alabama, Birmingham, AL Kimberly Whelan, MD, MSPH*, Smita Bhatia, MD‡ University of California‐Los Angeles, CA Jacqueline Casillas, MD, MSHS* University of California‐San Francisco, CA Robert Goldsby, MD* University of Chicago, Chicago, IL Tara Henderson, MD, MPH* University of Michigan, Ann Arbor, MI Raymond Hutchinson, MD* University of Minnesota, Minneapolis, MN Karim Sadak, MD, MPH, MSE*, Joseph Neglia, MD, MPH‡ UT‐Southwestern Medical Center, Dallas, TX Daniel Bowers, MD* U.T.M.D. Anderson Cancer Center, Houston, TX Louise Strong, MD*, Rebecca Howell, PhD‡ * Institutional Principal Investigator # Principal Investigator ‡ Member CCSS Steering Committee + Co‐Principal Investigator Page | 2 CCSS External Advisory Committee Garnet Anderson, PhD Fred Hutchinson Cancer Research Center Seattle, WA [email protected] Melissa Bondy, PhD Baylor College of Medicine Houston, TX [email protected] Susan Cohn, MD University of Chicago Chicago, IL [email protected] David Hodgson, MD University of Toronto Toronto, Ontario, Canada [email protected] Timothy Rebbeck, PhD Harvard University Boston, MA [email protected] Flora van Leeuwen, PhD Netherlands Cancer Institute Amsterdam, The Netherlands [email protected] Susan Weiner, PhD Children’s Cause for Cancer Advocacy Washington, DC [email protected] Page | 3 Project Organization/Leadership ROLE INVESTIGATOR Study Principal Investigator Greg Armstrong, MD, MSCE* Study Co-Principal Investigator Melissa Hudson, MD* Project Director Aaron McDonald, PhD* Working Group Chairs Second Neoplasms Joseph Neglia, MD, MPH* Chronic