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 | |
| 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 |