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Published in: Pediatric Rheumatology 1/2016

Open Access 01-07-2016 | Meeting abstracts

Proceedings of the 2016 Childhood Arthritis and Rheumatology Research Alliance (CARRA) Scientific Meeting

Toronto, Canada. 14-17 April 2016

Authors: Lampros Fotis, Nur Shaikh, Kevin Baszis, Anthony French, Phillip Tarr, Sriharsha Grevich, Peggy Lee, Sarah Ringold, Brian Leroux, Hannah Leahey, Megan Yuasa, Jessica Foster, Jeremy Sokolove, Lauren Lahey, William Robinson, Joshua Newsom, Anne Stevens, Rie Karasawa, Mayumi Tamaki, Megumi Tanaka, Toshiko Sato, Kazuo Yudoh, James N. Jarvis, Halima Moncrieffe, Mark F. Bennett, Monica Tsoras, Lorie Luyrink, Huan Xu, Sampath Prahalad, Paula Morris, Jason Dare, Peter A. Nigrovic, Margalit Rosenkranz, Mara Becker, Kathleen M. O’Neil, Thomas Griffin, Daniel J. Lovell, Alexei A. Grom, Mario Medvedovic, Susan D. Thompson, Lisha Zhu, Kaiyu Jiang, Laiping Wong, Michael J Buck, Yanmin Chen, Halima Moncrieffe, Laura Brungs, Tao Liu, Ting Wang, James N Jarvis, Khaled Alsaeid, Jasim Alfailakawi, Hamid Alenezi, Hazim Alsaeed, Tim Beukelman, Marc Natter, Norm Ilowite, Kelly Mieszkalski, Grendel Burrell, Brian Best, Helen Bristow, Shannon Carr, Anne Dennos, Rachel Kaufmann, Yukiko Kimura, Laura Schanberg, Peter R. Blier, Alexis Boneparth, Scott E. Wenderfer, L. Nandini Moorthy, Suhas M. Radhakrishna, Anna Carmela P. Sagcal-Gironella, Emily von Scheven, Kader Cetin Gedik, Salma Siddique, Cassyanne L. Aguiar, Doruk Erkan, Ezra Cohen, Yvonne Lee, Michelle Dossett, Darshan Mehta, Roger Davis, Mileka Gilbert, Beatrice Goilav, Esra Meidan, Joyce Hsu, Alexis Boneparth, Anabelle Chua, Stacy Ardoin, Scott E. Wenderfer, Emily Von Scheven, Natasha M. Ruth, Joyce Hui-Yuen, Kader Cetin Gedik, Liza Bermudez, Ashlea Cook, Lisa Imundo, Amy Starr, Andrew Eichenfield, Anca Askanase, Ginger Janow, Laura E. Schanberg, Soko Setoguchi, Victor Hasselblad, Elizabeth D. Mellins, Rayfel Schneider, Yukiko Kimura, Yukiko Kimura, Sriharsha Grevich, Timothy Beukelman, Esi Morgan, T. Brent Graham, Maria Ibarra, Yonit Sterba Ruas, Marisa Klein-Gitelman, Karen Onel, Sampath Prahalad, Marilynn Punaro, Sarah Ringold, Dana Toib, Heather Van Mater, Jennifer E. Weiss, Pamela F. Weiss, Kelly Mieszkalski, Laura E. Schanberg, Timothy S. H. Kwok, Jacinthe Bisaillon, Christine Smith, Lucie Brosseau, Jennifer Stinson, Adam M. Huber, Ciaran M. Duffy, Karine Toupin April, Laura B. Lewandowski, Christiaan Scott, Suzanne C. Li, Kathryn S. Torok, C. Egla Rabinovich, Sandy D. Hong, Mara L Becker, Fatma Dedeoglu, Maria F. Ibarra, Polly J Ferguson, Rob C. Fuhbrigge, Katie G. Stewart, Elena Pope, Ronald M. Laxer, Thomas G. Mason, Gloria C. Higgins, Xiaohu Li, Marilynn G. Punaro, George Tomlinson, Eleanor Pullenayegum, John Matelski, Laura Schanberg, Brian M. Feldman, Kalpana Manthiram, Hernan Correa, Kathryn Edwards, Edward J. Oberle, Michelle Bayer, Dominic O. Co, Hatice Ezgi Baris, Yvonne Chiu, Adam Huber, Susan Kim, Edward J. Oberle, Timothy Beukelman, Amir B. Orandi, Kevin W. Baszis, Vikas Dharnidharka, Mark F. Hoeltzel, Ann Reed, Adam Huber, George Tomlinson, Eleanor Pullenayegum, John Matelski, Y. Ingrid Goh, Laura Schanberg, Brian M. Feldman, Anja Schnabel, Ursula Range, Gabriele Hahn, Timo Siepmann, Reinhard Berner, Christian Michael Hedrich, Brandi Stevens, Kathryn S. Torok, Suzanne Li, Nicole Hershey, Megan Curran, Gloria Higgins, Katharine Moore, Egla Rabinovich, Anne M. Stevens, Jennifer Stinson, Mark Connelly, Adam Huber, Nadia Luca, Lynn Spiegel, Argerie Tsimicalis, Stephanie Luca, Naweed Tajuddin, Roberta Berard, Julia Barsalou, Sarah Campillo, Paul Dancey, Ciaran Duffy, Brian Feldman, Nicole Johnson, Patrick McGrath, Natalie Shiff, Shirley Tse, Lori Tucker, Charles Victor, Jennifer Stinson, Chitra Lalloo, Lauren Harris, Joseph Cafazzo, Lynn Spiegel, Brian Feldman, Nadia Luca, Ronald Laxer, Danielle R. Bullock, Richard K. Vehe, Lei Zhang, Colleen K. Correll, Suhas Ganguli, Max Shenberger, Ritesh Korumilli, Beth Gottlieb, Martha Rodriguez, Deirdre de Ranieri, Karen Onel, Linda Wagner-Weiner, Melissa Tesher, Elizabeth Roth Wojcicki, Kristyn L. Maletta, Dominic O. Co, Marsha Malloy, Sarah Thomson, Judyann C. Olson, Scott E. Wenderfer, Mileka Gilbert, Joyce Hsu, Sangeeta Sule, Tamar B. Rubinstein, Beatrice Goilav, Daryl M. Okamura, Annabelle Chua, Laurence A. Greenbaum, Jerome C. Lane, Emily von Scheven, Stacy P. Ardoin, Natasha M. Ruth, Jennifer M. P. Woo, Marsha M. Malloy, James A. Jegers, Dustin J. Hahn, Mary K. Hintermeyer, Stacey M. Martinetti, Gretchen R. Heckel, Elizabeth L. Roth-Wojcicki, Dominic O. Co, The CARRA Legacy Registry Investigators, for the CARRA JDM Committee, for the CARRA Registry Investigators

Published in: Pediatric Rheumatology | Special Issue 1/2016

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Table of Contents

P1 Serologic evidence of gut-driven systemic inflammation in juvenile idiopathic arthritis
Lampros Fotis, Nur Shaikh, Kevin Baszis, Anthony French, Phillip Tarr
P2 Oral health and anti-citrullinated peptide antibodies (ACPA) in juvenile idiopathic arthritis
Sriharsha Grevich, Peggy Lee, Sarah Ringold, Brian Leroux, Hannah Leahey, Megan Yuasa, Jessica Foster, Jeremy Sokolove, Lauren Lahey, William Robinson, Joshua Newsom, Anne Stevens
P3 Novel autoantigens for endothelial cell antibodies in pediatric rheumatic diseases identified by proteomics
Rie Karasawa, Mayumi Tamaki, Megumi Tanaka, Toshiko Sato, Kazuo Yudoh, James N. Jarvis
P4 Transcriptional profiling reveals monocyte signature associated with JIA patient poor response to methotrexate
Halima Moncrieffe, Mark F. Bennett, Monica Tsoras, Lorie Luyrink, Huan Xu, Sampath Prahalad, Paula Morris, Jason Dare, Peter A. Nigrovic, Margalit Rosenkranz, Mara Becker, Kathleen M. O’Neil, Thomas Griffin, Daniel J. Lovell, Alexei A. Grom, Mario Medvedovic, Susan D. Thompson
P5 A multi-dimensional genomic map for polyarticular juvenile idiopathic arthritis
Lisha Zhu, Kaiyu Jiang, Laiping Wong, Michael J Buck, Yanmin Chen, Halima Moncrieffe, Laura Brungs, Tao Liu, Ting Wang, James N Jarvis
P6 Tocilizumab for treatment of children with refractory JIA
Khaled Alsaeid, Jasim Alfailakawi, Hamid Alenezi, Hazim Alsaeed
P7 Clinical characteristics of the initial patients enrolled in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry
Tim Beukelman, Marc Natter, Norm Ilowite, Kelly Mieszkalski, Grendel Burrell, Brian Best, Helen Bristow, Shannon Carr, Anne Dennos, Rachel Kaufmann, Yukiko Kimura, Laura Schanberg
P8 Comparative performance of small and large clinical centers in a comprehensive pediatric rheumatology disease registry
Peter R Blier
P9 Clinical characteristics of children with membranous lupus nephritis: The Childhood Arthritis and Rheumatology Research Alliance Legacy Registry
Alexis Boneparth, Scott E. Wenderfer, L. Nandini Moorthy, Suhas M. Radhakrishna, Anna Carmela P. Sagcal-Gironella, Emily von Scheven
P10 Rituximab use in pediatric lupus anticoagulant hypoprothrombinemia syndrome - a two center experience
Kader Cetin Gedik, Salma Siddique, Cassyanne L. Aguiar, Doruk Erkan
P11 Predictors of complementary and alternative medicine use and response in children with musculoskeletal conditions
Ezra Cohen, Yvonne Lee, Michelle Dossett, Darshan Mehta, Roger Davis
P12 Comparison of pediatric rheumatology and nephrology survey results for the treatment of refractory proliferative lupus nephritis and renal flare in juvenile SLE
Mileka Gilbert, Beatrice Goilav, Esra Meidan, Joyce Hsu, Alexis Boneparth, Anabelle Chua, Stacy Ardoin, Scott E. Wenderfer, Emily Von Scheven, Natasha M. Ruth
P13 Transitioning lupus patients from pediatric to adult rheumatology
Joyce Hui-Yuen, Kader Cetin Gedik, Liza Bermudez, Ashlea Cook, Lisa Imundo, Amy Starr, Andrew Eichenfield, Anca Askanase
P14 The systemic juvenile idiopathic arthritis cohort of the Childhood Arthritis & Rheumatology Research Alliance Registry
Ginger Janow, Laura E. Schanberg, Soko Setoguchi, Victor Hasselblad, Elizabeth D. Mellins, Rayfel Schneider, Yukiko Kimura, The CARRA Legacy Registry Investigators
P15 Results of the pilot study of the Childhood Arthritis and Rheumatology Research Alliance (CARRA) consensus treatment plans for new-onset systemic juvenile idiopathic arthritis
Yukiko Kimura, Sriharsha Grevich, Timothy Beukelman, Esi Morgan, T Brent Graham, Maria Ibarra, Yonit Sterba Ruas, Marisa Klein-Gitelman, Karen Onel, Sampath Prahalad, Marilynn Punaro, Sarah Ringold, Dana Toib, Heather Van Mater, Jennifer E. Weiss, Pamela F. Weiss, Kelly Mieszkalski, Laura E. Schanberg
P16 A systemic review of pain relief modalities in juvenile idiopathic arthritis: First step in developing a novel decision support intervention
Timothy S. H. Kwok, Jacinthe Bisaillon, Christine Smith, Lucie Brosseau, Jennifer Stinson, Adam M. Huber, Ciaran M. Duffy, Karine Toupin April
P17 Barriers and facilitators to care retention for pediatric systemic lupus erythematous patients in South Africa: A qualitative study
Laura B Lewandowski, Christiaan Scott
P18 Evaluating the feasibility of conducting comparative effectiveness studies in juvenile Localized Scleroderma (jLS)
Suzanne C. Li, Kathryn S. Torok, C. Egla Rabinovich, Sandy D. Hong, Mara L Becker, Fatma Dedeoglu, Maria F. Ibarra, Polly J Ferguson, Rob C. Fuhbrigge, Katie G. Stewart, Elena Pope, Ronald M. Laxer, Thomas G. Mason, Gloria C. Higgins, Xiaohu Li, Marilynn G. Punaro, George Tomlinson, Eleanor Pullenayegum, John Matelski, Laura Schanberg, Brian M. Feldman
P19 Tonsillar histology in patients with periodic fever, aphthous stomatitis, pharyngitis, adenitis (PFAPA) syndrome
Kalpana Manthiram, Hernan Correa, Kathryn Edwards
P20 Clinical course of juvenile dermatomyositis presenting as skin predominant disease
Edward J. Oberle, Michelle Bayer, Dominic O. Co, Hatice Ezgi Baris, Yvonne Chiu, Adam Huber, Susan Kim
P21 A Survey of musculoskeletal ultrasound practices of pediatric rheumatologists in North America
Edward J Oberle, Timothy Beukelman
P22 Assessment, classification and treatment of calcinosis as a complication of juvenile dermatomyositis: A survey of pediatric rheumatologists by the Childhood Arthritis and Rheumatology Research Alliance
Amir B. Orandi, Kevin W. Baszis, Vikas Dharnidharka, Mark F. Hoeltzel, for the CARRA JDM Committee
P23 CARRA dermatomyositis CTP pilot study
Ann Reed, Adam Huber, George Tomlinson, Eleanor Pullenayegum, John Matelski, Y. Ingrid Goh, Laura Schanberg, Brian M. Feldman
P24 Unexpectedly high incidences and prolonged disease activity in children with chronic non-bacterial osteomyelitis (CNO) as compared to bacterial osteomyelitis
Anja Schnabel, Ursula Range, Gabriele Hahn, Timo Siepmann, Reinhard Berner, Christian Michael Hedrich
P25 Juvenile systemic sclerosis cohort within the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Legacy Registry: Follow up characteristics
Brandi Stevens, Kathryn S. Torok, Suzanne Li, Nicole Hershey, Megan Curran, Gloria Higgins, Katharine Moore, Egla Rabinovich, Anne M. Stevens, for the CARRA Registry Investigators
P26 Development and usability testing of an iPad and desktop psycho-educational game for children with Juvenile Idiopathic Arthritis and their parents
Jennifer Stinson, Mark Connelly, Adam Huber, Nadia Luca, Lynn Spiegel, Argerie Tsimicalis, Stephanie Luca, Naweed Tajuddin, Roberta Berard, Julia Barsalou, Sarah Campillo, Paul Dancey, Ciaran Duffy, Brian Feldman, Nicole Johnson, Patrick McGrath, Natalie Shiff, Shirley Tse, Lori Tucker, Charles Victor
P27 iCanCope TM: User-centred design and development of a smartphone app to support self-management for youth with arthritis pain
Jennifer Stinson, Chitra Lalloo, Lauren Harris, Joseph Cafazzo, Lynn Spiegel, Brian Feldman, Nadia Luca, Ronald Laxer
P28 Accessing pediatric rheumatology care: Despite barriers, few parents prefer telemedicine
Danielle R. Bullock, Richard K. Vehe, Lei Zhang, Colleen K. Correll1
P29 Exploration of factors contributing to time to achieve clinically inactive disease (CID) in juvenile idiopathic arthritis (JIA): A preliminary report
Suhas Ganguli, Max Shenberger, Ritesh Korumilli, Beth Gottlieb
P30 Pediatric rheumatology referral patterns: Presenting complaints of new patients at a large, urban academic center
Martha Rodriguez, Deirdre de Ranieri, Karen Onel, Linda Wagner-Weiner, Melissa Tesher
P31 Quality improvement (QI) initiatives in childhood systemic lupus erythematosus (cSLE)
Elizabeth Roth Wojcicki, Kristyn L. Maletta, Dominic O. Co, Marsha Malloy, Sarah Thomson, Judyann C. Olson
P32 Proliferative lupus nephritis in juvenile SLE: Support from the pediatric nephrology community for the definitions of responsiveness and flare in the 2012 consensus treatment plans
Scott E. Wenderfer, Mileka Gilbert, Joyce Hsu, Sangeeta Sule, Tamar B. Rubinstein, Beatrice Goilav, Daryl M. Okamura, Annabelle Chua, Laurence A. Greenbaum, Jerome C. Lane, Emily von Scheven, Stacy P. Ardoin, Natasha M. Ruth
P33 The steroid taper app: Making of a mobile app
Jennifer M. P. Woo, Marsha M. Malloy, James A. Jegers, Dustin J. Hahn, Mary K. Hintermeyer, Stacey M. Martinetti, Gretchen R. Heckel, Elizabeth L. Roth-Wojcicki, Dominic O. Co
Metadata
Title
Proceedings of the 2016 Childhood Arthritis and Rheumatology Research Alliance (CARRA) Scientific Meeting
Toronto, Canada. 14-17 April 2016
Authors
Lampros Fotis
Nur Shaikh
Kevin Baszis
Anthony French
Phillip Tarr
Sriharsha Grevich
Peggy Lee
Sarah Ringold
Brian Leroux
Hannah Leahey
Megan Yuasa
Jessica Foster
Jeremy Sokolove
Lauren Lahey
William Robinson
Joshua Newsom
Anne Stevens
Rie Karasawa
Mayumi Tamaki
Megumi Tanaka
Toshiko Sato
Kazuo Yudoh
James N. Jarvis
Halima Moncrieffe
Mark F. Bennett
Monica Tsoras
Lorie Luyrink
Huan Xu
Sampath Prahalad
Paula Morris
Jason Dare
Peter A. Nigrovic
Margalit Rosenkranz
Mara Becker
Kathleen M. O’Neil
Thomas Griffin
Daniel J. Lovell
Alexei A. Grom
Mario Medvedovic
Susan D. Thompson
Lisha Zhu
Kaiyu Jiang
Laiping Wong
Michael J Buck
Yanmin Chen
Halima Moncrieffe
Laura Brungs
Tao Liu
Ting Wang
James N Jarvis
Khaled Alsaeid
Jasim Alfailakawi
Hamid Alenezi
Hazim Alsaeed
Tim Beukelman
Marc Natter
Norm Ilowite
Kelly Mieszkalski
Grendel Burrell
Brian Best
Helen Bristow
Shannon Carr
Anne Dennos
Rachel Kaufmann
Yukiko Kimura
Laura Schanberg
Peter R. Blier
Alexis Boneparth
Scott E. Wenderfer
L. Nandini Moorthy
Suhas M. Radhakrishna
Anna Carmela P. Sagcal-Gironella
Emily von Scheven
Kader Cetin Gedik
Salma Siddique
Cassyanne L. Aguiar
Doruk Erkan
Ezra Cohen
Yvonne Lee
Michelle Dossett
Darshan Mehta
Roger Davis
Mileka Gilbert
Beatrice Goilav
Esra Meidan
Joyce Hsu
Alexis Boneparth
Anabelle Chua
Stacy Ardoin
Scott E. Wenderfer
Emily Von Scheven
Natasha M. Ruth
Joyce Hui-Yuen
Kader Cetin Gedik
Liza Bermudez
Ashlea Cook
Lisa Imundo
Amy Starr
Andrew Eichenfield
Anca Askanase
Ginger Janow
Laura E. Schanberg
Soko Setoguchi
Victor Hasselblad
Elizabeth D. Mellins
Rayfel Schneider
Yukiko Kimura
Yukiko Kimura
Sriharsha Grevich
Timothy Beukelman
Esi Morgan
T. Brent Graham
Maria Ibarra
Yonit Sterba Ruas
Marisa Klein-Gitelman
Karen Onel
Sampath Prahalad
Marilynn Punaro
Sarah Ringold
Dana Toib
Heather Van Mater
Jennifer E. Weiss
Pamela F. Weiss
Kelly Mieszkalski
Laura E. Schanberg
Timothy S. H. Kwok
Jacinthe Bisaillon
Christine Smith
Lucie Brosseau
Jennifer Stinson
Adam M. Huber
Ciaran M. Duffy
Karine Toupin April
Laura B. Lewandowski
Christiaan Scott
Suzanne C. Li
Kathryn S. Torok
C. Egla Rabinovich
Sandy D. Hong
Mara L Becker
Fatma Dedeoglu
Maria F. Ibarra
Polly J Ferguson
Rob C. Fuhbrigge
Katie G. Stewart
Elena Pope
Ronald M. Laxer
Thomas G. Mason
Gloria C. Higgins
Xiaohu Li
Marilynn G. Punaro
George Tomlinson
Eleanor Pullenayegum
John Matelski
Laura Schanberg
Brian M. Feldman
Kalpana Manthiram
Hernan Correa
Kathryn Edwards
Edward J. Oberle
Michelle Bayer
Dominic O. Co
Hatice Ezgi Baris
Yvonne Chiu
Adam Huber
Susan Kim
Edward J. Oberle
Timothy Beukelman
Amir B. Orandi
Kevin W. Baszis
Vikas Dharnidharka
Mark F. Hoeltzel
Ann Reed
Adam Huber
George Tomlinson
Eleanor Pullenayegum
John Matelski
Y. Ingrid Goh
Laura Schanberg
Brian M. Feldman
Anja Schnabel
Ursula Range
Gabriele Hahn
Timo Siepmann
Reinhard Berner
Christian Michael Hedrich
Brandi Stevens
Kathryn S. Torok
Suzanne Li
Nicole Hershey
Megan Curran
Gloria Higgins
Katharine Moore
Egla Rabinovich
Anne M. Stevens
Jennifer Stinson
Mark Connelly
Adam Huber
Nadia Luca
Lynn Spiegel
Argerie Tsimicalis
Stephanie Luca
Naweed Tajuddin
Roberta Berard
Julia Barsalou
Sarah Campillo
Paul Dancey
Ciaran Duffy
Brian Feldman
Nicole Johnson
Patrick McGrath
Natalie Shiff
Shirley Tse
Lori Tucker
Charles Victor
Jennifer Stinson
Chitra Lalloo
Lauren Harris
Joseph Cafazzo
Lynn Spiegel
Brian Feldman
Nadia Luca
Ronald Laxer
Danielle R. Bullock
Richard K. Vehe
Lei Zhang
Colleen K. Correll
Suhas Ganguli
Max Shenberger
Ritesh Korumilli
Beth Gottlieb
Martha Rodriguez
Deirdre de Ranieri
Karen Onel
Linda Wagner-Weiner
Melissa Tesher
Elizabeth Roth Wojcicki
Kristyn L. Maletta
Dominic O. Co
Marsha Malloy
Sarah Thomson
Judyann C. Olson
Scott E. Wenderfer
Mileka Gilbert
Joyce Hsu
Sangeeta Sule
Tamar B. Rubinstein
Beatrice Goilav
Daryl M. Okamura
Annabelle Chua
Laurence A. Greenbaum
Jerome C. Lane
Emily von Scheven
Stacy P. Ardoin
Natasha M. Ruth
Jennifer M. P. Woo
Marsha M. Malloy
James A. Jegers
Dustin J. Hahn
Mary K. Hintermeyer
Stacey M. Martinetti
Gretchen R. Heckel
Elizabeth L. Roth-Wojcicki
Dominic O. Co
The CARRA Legacy Registry Investigators
for the CARRA JDM Committee
for the CARRA Registry Investigators
Publication date
01-07-2016
Publisher
BioMed Central
Published in
Pediatric Rheumatology / Issue Special Issue 1/2016
Electronic ISSN: 1546-0096
DOI
https://doi.org/10.1186/s12969-016-0098-0