Infantile Spasms SIG

 

Leadership: (name/email)

Group leader: Daniel Shrey, MD – Children’s Hospital of Orange County (dshrey@choc.org)

Group coordinator: Virginia Allhusen, PhD – Children’s Hospital of Orange County (virginia.allhusen@choc.org)

 

SIG Objectives:

  • Identify and study gaps in our understanding of infantile spasms – a rare, multifaceted, and often devastating disease.
  • Improve the health and quality of life of children with infantile spasms and their caregivers by improving their early identification and effective treatment.

 

Current Projects and Collaborations:

      Working document on Google Docs (click here)
  • Evaluating the ideal time to assess for first line treatment response for new onset infantile spasms
  • Treatment disparities – their causes and effects in children with infantile spasms
  • A national study of multi-modal biomarkers and their predictive power for children with infantile spasms
  • Corpus callosotomy as an effective treatment for refractory infantile spasms

 

Plans for Future Projects:

  • A machine-learning approach to outcome prediction in children with infantile spasms
  • Variability in second-line treatment of infantile spasms – causes and effects
  • ISITT2 clinical trial assessing the effectiveness of dual therapy for infantile spasms

 

Upcoming meetings:

Second Thursday of the month at 9am PST/12pm EST. Meetings: 1/14/21 and 2/11/21.

 

Members:

(updated every 6 months, names +/- emails)

 

Name Institution Email
Adam Numis UCSF adam.numis@ucsf.edu
Archana Pasupuleti Children’s National apasupul@childrensnational.org
Asim Shahid Rainbow Babies asim.shahid@uhhospitals.org
Chellamani Harini Boston Children’s chellamani.harini@childrens.harvard.edu
Christopher Yuskaitis Boston Children’s christopher.yuskaitis@childrens.harvard.edu
Cindy Keator Cook Children’s cynthia.keator@cookchildrens.org
Daniel Shrey CHOC/UCI dshrey@choc.org
Debopam Samanta Arkansas Children’s DSamanta@uams.edu
Emily Spelbrink Stanford espelbrink@stanford.edu
Erin Fedak-Romanowski University of Michigan fedake@med.umich.edu
Ernesto Gonzales UCSF ernesto.gonzalez-giraldo@ucsf.edu
Fiona Baumer Stanford fbaumer@stanford.edu
Jason Coryell Oregon Health Sciences Univ coryellj@ohsu.edu
Jason Lockrow Seattle Children’s jason.lockrow@seattlechildrens.org
Jennifer Cohen Connecticut Children’s jcohen01@connecticutchildrens.org
John Millichap Lurie Children’s jmillichap@luriechildrens.org
John Mytinger Nationwide Children’s john.mytinger@nationwidechildrens.org
Jun Park Rainbow Babies jun.park@uhhospitals.org
Katherine Nickels Mayo Clinic nickels.katherine@mayo.edu
Kelly Knupp Colorado Children’s kelly.knupp@childrenscolorado.org
Liu Lin Thio Wash Univ St Louis thiol@wustl.edu
Matthew Sweney Utah matthew.sweney@hsc.utah.edu
Mike Ciliberto University of Iowa michael-ciliberto@uiowa.edu
Patricia McGoldrick Maria Fareri-Boston Children’s patricia_mcgoldrick@BCHPhysicians.org
Rani Singh Atrium Health rani.singh@atriumhealth.org
Renee Shellhaas University of Michigan shellhaa@med.umich.edu
Shaun Hussain UCLA shussain@mednet.ucla.edu
Sookyong Koh Emory sookyong.koh@emory.edu
Steven Wolf Maria Fareri/Boston Children’s steven.wolfmd@gmail.com
Sunil Naik Penn State snaik2@pennstatehealth.psu.edu
Tracy Dixon-Salazar LGSF/CZF tracy@lgsfoundation.org
Zach Grinspan Cornell zag9005@med.cornell.edu