Steering Committee & Workgroup Leader Roster
Date confirmedCommittee & LeadershipEmail AddressDate Formed (Month/Year)Notes
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1
209/21/22
Cross-Cutting Research Committee (CCRC)
3
CCRC Chair: Tova Ronis
tronis@childrensnational.org
4
CCRC Vice Chair: Peter Chira
pchira@health.ucsd.edu
509/21/22
Implementation Science Workgroup
2019
6
Cagri Yildirim Toruner
c.yildir@texaschildrens.org
7
Rajdeep Pooni
rpooni@stanford.edu
8
Ingrid Goh
ingrid.goh@sickkids.ca
909/21/22
Mental Health Workgroup
April 2015
10
Andrea Knight
andrea.knight@sickkids.ca
11
Tamar Rubinstein
trubinst@montefiore.org
12
Natoshia Cunningham
natoshia@msu.edu
1309/21/22
Reproductive Health Workgroup
April/May 2019
14
Cuoghi Edens (primary)
cuoghi.edens@gmail.com
15
Kimberly Hays
klynnehays@gmail.com
1609/21/22
Transition Workgroup
17
Joyce Chang
Joyce.Chang@childrens.harvard.edu
18
Erica Lawson
erica.lawson@ucsf.edu
1909/21/22
Clinical Informatics Workgroup
September 2020
20
Rajdeep Pooni
rpooni@stanford.edu
21
Tova Ronis
tronis@childrensnational.org
22
Alysha Taxter
Alysha.Taxter@nationwidechildrens.org
23
Tzielan Lee
tzlee@stanford.edu
2409/21/22
Vaccination Workgroup
2021
25
Vidya Sivaraman
vidya.sivaraman@nationwidechildrens.org
26
Merav Heshin-Bekenstein
meravheshin@gmail.com
27
Beth Rutstein
RUTSTEINB@chop.edu
2809/21/22
Health Equity Research (HER) Workgroup
2021
29
Jennifer Woo
jennifer.woo@nih.gov
30
Jim Jarvis
jamesjar@buffalo.edu
3109/23/22
Early Investigator (EI) Committee
32
EI Chair: Kaveh Ardalan
kaveh.ardalan@duke.edu
33
EI Vice Chair: Sabrina Gmuca
gmucas@email.chop.edu
3409/23/22
Fellows Subcommittee
35
Fellows Co-Chair: Sara Patrizi
spatrizi@stanford.edu
36
Fellows Co-Chair: Laura Nedorezov@cchmc.org
laura.nedorezov@cchmc.org
3709/23/22
Medical Education Research
38
Megan Curran
megan.curran@childrenscolorado.org
39
Kristen Hayward
kristen.hayward@seattlechildrens.org
40
Jay Mehta
mehtaj@email.chop.edu
4109/23/22
Juvenile Dermatomyositis (JDM) Committee
42
JDM Chair: Susan Kim
susan.kim@ucsf.edu
43
JDM Vice Chair: Stacey Tarvin
starvin@iu.edu
4409/23/22
Biologic Therapy in Juvenile Dermatomyositis Workgroup
45
Chuck Spencer
spencercharlesh1@gmail.com
46
Stacey Tarvin
starvin@iu.edu
47
Hanna Kim
48
Matthew Sherman (Fellow)
sherman.matthew.a@gmail.com(not noted on fellow liaison list)
4909/23/22
Calcinosis in JDM Workgroup
50
Dawn Wahezi
dwahezi@montefiore.org
51
Belina Yi (Fellow Liaison)
belyi@chla.usc.edu
5209/23/22
JDM/SLE Dermatology Workgroup
53
Susan Kim
susan.kim@ucsf.edu
54
Heather Brandling Bennett
habb@seattlechildrens.org
5509/23/22
Quality of Care in JDM Workgroup
56
Heather Tory
htory@connecticutchildrens.org
5709/23/22
JDM COVID-19 Workgroup
58
Dawn Wahezi
dwahezi@montefiore.org
5909/23/22
Rehabilitation & Exercise in JDM Workgroup
2021
60
Kristin Houghton
khoughton@cw.bc.ca
61
Helga Sanner
helga.sanner@medisin.uio.no
62
Kristine Risum
krisum@ous-hf.no
63
Sue Maillard
Sue.Maillard@gosh.nhs.uk
6409/23/22
Telemedicine and JDM Workgroup
July 2021
65
Peter Blier
peter.blier@gmail.com
66
Stacey Tarvin
starvin@iu.edu
67
Ingrid Goh
ingrid.goh@sickkids.ca
6809/23/22
Translational Medicine in JDM (TM for JM) Workgroup
2021
69
Jessica Neely
jessica.neely@ucsf.edu
70
Jessica Turnier
turnierj@med.umich.edu
7109/23/22
Juvenile Idiopathic Arthritis (JIA) Committee
72
JIA Chair: Marinka Twilt
marinka.twilt@albertahealthservices.ca
73
JIA Vice Chair: Daniel Horton
daniel.horton@rutgers.edu
7409/23/22
Inactive Disease Workgroup
75
Marinka Twilt
marinka.twilt@ahs.ca
76
Olha Halyabar
Olha.Halyabar@childrens.harvard.edu
7709/23/22
JIA Outcomes Workgroup
78
Beth Gottlieb
gottlieb@northwell.edu
7909/23/22
Juvenile Spondyloarthritis (JSpA) Workgroup
80
Erin Treemarcki
erin.treemarcki@hsc.utah.edu
81
Melissa Oliver
msoliver@iu.edu
8209/23/22
Systemic Juvenile Idiopathic Arthritis (sJIA) Workgroup
83
Karen Onel
onelk@hss.edu
84
Susan Shenoi
susan.shenoi@seattlechildrens.org
85
Rebecca Trachtman
rebecca.trachtman@mssm.edu
8609/23/22
TMJ Interest Group Workgroup
87
Melissa Lerman
lermanm@chop.edu
88
Nancy Pan
PanN@HSS.EDU
8909/23/22
CARRA Ultrasound Workgroup
90
Deirdre De Ranieri
dderanieri@luriechildrens.org
91
Ed Oberle
edward.oberle@nationwidechildrens.org
92
Johannes Roth
jroth@cheo.on.ca
93
Tracy Ting
tracy.ting@cchmc.org
94
Patricia Vega-Fernandez
patriciavegaf@gmail.com
95
Clara Lin
clara.lin@childrenscolorado.org
96
Heather Benham
heather.benham@tsrh.org
9709/23/22
Uveitis Workgroup
98
Ashley Cooper
amcooper@cmh.edu
99
Melissa Lerman
lermanm@email.chop.edu
10009/23/22
Pain Committee
101
Pain Chair: Susmita Kashikar-Zuck
susmita.kashikar-zuck@cchmc.org
102
Pain Vice Chair: Jennifer Weiss
jennifer.weiss@hmhn.org
10308/29/22
Fibromyalgia Intervention Training (FIT) Teens Multi-Center RCT Workgroup
104
Susmita Kashikar-Zuck
susmita.kashikar-zuck@cchmc.org(members include M. Connelly, C. Hoffart, S. Ardoin, A. Goldstein-Leever)
10509/23/22
Juvenile Fibromyalgia Diagnostic Criteria Workgroup
106
Jen Weiss
jennifer.weiss@hmhn.orgPatient/parent advisory panel includes Ela Chintagunta, Tiffany Crawford and Corinne Pinter.
107
Susmita Kashikar-Zuck
susmita.kashikar-zuck@cchmc.org
10809/23/22
Prevalence of Widespread Pain in pSLE & JDM
109
Sara Patrizi
spatrizi@stanford.edu
110
Jennifer Weiss
jennifer.weiss@hmhn.org
111
Susmita Kashikar-Zuck
susmita.kashikar-zuck@cchmc.org
11209/23/22
Development of Non-nociceptive Pain in JIA
2022New workgroup noted on Sept 2022 report
113
Mark Connelly
mconnelly1@cmh.edu
114
Jennifer Weiss
jennifer.weiss@hmhn.org
115
Susmita Kashikar-Zuck
susmita.kashikar-zuck@cchmc.org
116
Jaymin Upadhyay
Jaymin.upadhyay@childrens.harvard.edu
117
Mara Becker
mara.becker@duke.edu
11809/23/22
RCN (Research Coordinator Network) Committee
119
RCN Chair: Joanne Drew
joanne.drew@nationwidechildrens.org
120
RCN Vice Chair: Logan Lentini
llentini@ufl.edu
12109/23/22
SLE (Systemic Lupus Erythematosus) Committee
122
SLE Chair: Andrea Knight
andrea.knight@sickkids.ca
123
SLE Vice Chair: Laura Lewandowski
laura.lewandowski@nih.gov
12409/23/22
Antiphospholipid Syndrome Workgroup
125
Deborah McCurdy
dmccurdy@mednet.ucla.edu
126
Elizabeth Sloan
elizabethsloan@gmail.com
127
Jackie Madison
madisonj@med.umich.eduSince 8/22
12809/23/22
JDM/SLE Dermatology Workgroup
Duplicate from JDM Workgroup
129
Heather Brandling-Bennett
habb@seattlechildrens.org
130
Susan Kim
Susan.kim@ucsf.edu
13109/23/22
CLUTCH -Childhood-onset LUpus Translational research Collaboration Hub Workgroup
2020Formerly Lupus Genetics Workgroup. Name change 9/22
132
Linda Hiraki
linda.hiraki@sickkids.ca
133
Sue Thompson
susan.thompson@cchmc.org
134
Laura Lewandowski
laura.lewandowski@nih.gov
13509/23/22
SLE Nephritis Workgroup
136
Rebecca Sadun
rebecca.sadun@duke.edu
137
Scott Wenderfer
wenderse@hotmail.com
13809/23/22
Neuropsychiatric Lupus Workgroup
March 2022
139
Ekemini Ogbu
Ekemini.Ogbu@cchmc.org
140
Martha Rodriguez
martrodr@iu.edu
141
Andrea Knight (Advisor)
andrea.knight@sickkids.ca
14209/23/22
Small Centers
143
Small Centers Chair: Sheetal Vora
sheetal.vora@atriumhealth.org
144
Small Centers Vice Chair: Kathryn Cook
kphillippi-cook@akronchildrens.org
14509/23/22
Small Centers Wellness Initiative
new as of 9/22
146
Kate Cook
kphillippi-cook@akronchildrens.org
147
Sheetal Vora
sheetal.vora@atriumhealth.org
14809/23/22
Rare Diseases Committee
149
RD Chair: Eve Wu
eveline.wu@unc.edu
150
RD Vice Chair: Jessica Bloom
jessica.bloom@childrenscolorado.org
15109/23/22
ANCA Associated Vasculitis (AAV) Workgroup
152
David Cabral
dcabral@cw.bc.ca
153
Linda Wagner-Weiner
lww@uchicago.edu
154
Vidya Sivaraman
vidya.sivaraman@nationwidechildrens.org
15509/23/22
Inflammatory Brain Disease Workgroup
156
Eyal Muscal
emuscal@bcm.edu
157
Heather Van Mater
heather.vanmater@duke.edu
158
Susanne Benseler
susanne.benseler@ahs.ca
15909/23/22
Childhood Sjogren Disease Workgroup
160
Scott Lieberman
scott-lieberman@uiowa.edu
161
Sara Stern
Sara.Stern@hsc.utah.edu
162
Matthew Basiaga
Basiaga.Matthew@mayo.edu
16309/23/22
CNO/CRMO (Chronic Non-bacterial Osteymyelitis/Chronic Recurrent Multifocal Ostemyelitis) Workgroup
164
Fatma Dedeoglu
fatma.dedeoglu@childrens.harvard.edu
165
Polly Ferguson
polly-ferguson@uiowa.edu
166
Melissa Oliver
msoliver@iu.edu
167
Eveline Wu
eveline.wu@unc.edu
168
Yongdong (Dan) Zhao
yongdong.zhao@seattlechildrens.org
16909/23/22
Pediatric Scleroderma Workgroup
170
Suzanne Li
suzanne.li@hmhn.org
171
Kathryn Torok
kathryn.torok@chp.edu
17209/23/22
Refractory Kawasaki Disease (KD) Workgroup
173
Cagri Yildirim Toruner
cagri.yildirimtoruner@bcm.edu
174
Bianca Lang
bianca.lang@dal.ca
17509/23/22
PFAPA (Periodic Fever, Apthous Stomatitis, Pharyngitis, and Adenitis) and Autoinflammatory Diseases Workgroup
176
Sivia Lapidus
sivia.lapidus@hmhn.org
17709/23/22
Autoinflammatory Program Development
178
Maria Guttierez
mgutie10@jhmi.edu
179
Grant Schulert
Grant.Schulert@cchmc.org
18009/23/22
SAID Advocacy
181
Fatma Dedeoglu
fatma.dedeoglu@childrens.harvard.edu
182
Karen Durrant
autoinflammatory@gmail.com
18309/23/22
PFAPA CTP
184
Nadine Saad
nmsaad@med.umich.edu
185
Patricia A. DeLaMora
pad9003@med.cornell.edu
18609/23/22
Translational Research & Technology Research Committee (TRTC) Committee
187
TRTC Chair: Lauren Henderson
lauren.henderson@childrens.harvard.edu
188
TRTC Vice Chair: Grant Schulert
grant.schulert@cchmc.org
18909/23/22
Patient/Family Advisory Council Workgroup
190
Melanie Kohlheim - Chair
melaniejaprojects@gmail.com
191
Lauren Henderson - Advisor
lauren.henderson@childrens.harvard.edu
19209/23/22
EI Outreach
193
Jessica Turnier - Chair
turnierj@med.umich.edu
194
Grant Schulert - Adivsor
grant.schulert@cchmc.org
19509/23/22
SOP Workgroup
196
Anna Patrick - Chair
anna.e.patrick@vumc.org
197
Scott Canna - Advisor
cannas@chop.edu
19809/23/22
Archiving
199
Sue Thompson
susan.thompson@cchmc.org
200
Lauren Henderson
lauren.henderson@childrens.harvard.edu
201
Melanie Kohlheim
melaniejaprojects@gmail.com
20209/23/22
Genomic Data Management
2021
203
Catherine Lavalee
catherine.lavallee@childrens.harvard.edu
204
Lauren Henderson-- Advisor
lauren.henderson@childrens.harvard.edu
205
Genomic Data Sharing
2022
206
Grant Schulert
grant.schulert@cchmc.org
207
208
209
210
211
212
213
214
215
216
217
218
219
220
221
222
223
224
225
226
227
228
229
230
231
232
233
234
235
236
237
238
+TRTC Past Workgroups/Projects
248
249
250
+Past JIA Workgroup Leaders
252
253
254
-Pain Past Workgroups/Projects
255
+Chronic Widespread Pain in JIA Workgroup - Completed and published
260
+iCanCope App Workgroup - Completed and published
263
+Punch Biopsy for Juvenile Primary Fibromyalgia Workgroup - Completed and published
265
+Juvenile Fibromyalgia in Patients with Juvenile Idiopathic Arthritis
267
+Past Pain Workgroup Leaders
269
270
+JDM Past Workgroups/Projects
275
276
277
+CCRC Past Workgroup Leaders
279
280
281
282
Development of a Pain Decision Support Aid for JIA Workgroup
Not on september 2022 report, forper pain group
283
Karine Toupin April
ktoupin@cheo.on.ca
284
Gut Microbiota in Juvenile Fibromyalgia
former pain group
285
Jen Weiss
jennifer.weiss@hackensackmeridian.org
286
Matt Stoll
mstoll@peds.uab.edu
287
288
289
Pain modulation, sleep and inflammation in teens with JFM Workgroup
former pain group
290
Chris King
Christopher.King@cchmc.org
291
292
293
RARE DISEASES
294
-PFAPA WORKGROUP
295
AIDAI Validation
From PFAPA group/RD, not on 9/22 report
296
Mariana Marques
mariana_marques@hotmail.com
297
Nadine Saad
nmsaad@med.umich.edu
298
299
300
Implementation Science
From PFAPA group/RD, not on 9/22 report
301
Cagri Tourner
cagri.yildirimtoruner@bcm.edu
302
Autoinflammatory Registry
From PFAPA group/RD, not on 9/22 report
303
Marinka Twilt
Marinka.Twilt@albertahealthservices.ca
304
30506/06/22
Transitional/PFAPA Genetic Consrtium
From PFAPA group/RD, not on 9/22 report
306
Kalpana Manthiram
kalpana.manthiram@nih.gov
307
308
309
Ali Yalcindag
ayalcindag@lifespan.orgformer KD workgroup leader, not on 9/22 report
310
311
312
Laura Lewandowski - Chair
laura.lewandowski@nih.govformer leader for Sample Arching workgroup (TRTC)
313
314
Biosample Collection/Biorepository
removed from report 9/22, former trtc group
315
Lauren Henderson
lauren.henderson@childrens.harvard.edu
316
317
318
Transitional Initiative
removed from report 9/22, former trtc group
319
Cory Stingl - Chair
divercory@gmail.com
320
Maria Gutierrez - Chair
mgutie10@jhmi.edu
321
Peter Nigrovic - Advisor
peter.nigrovic@childrens.harvard.edu
322