Face-to-Face 2017


Bethesda North Marriott Hotel
5701 Marinelli Road
Rockville, MD 20852

“Resources to Assist Investigations in Primary Immune Deficiency Diseases”
Room: White Oak


Monday, January 9th 2017

Please download the Agenda below to view the reference material associated with today’s presentations.


CLICK TO DOWNLOAD: Agenda / Resource Material (.pdf)

Emergency Contacts

Tara Caulder: 646-209-6803
Marla Goldsmith: 856-287-2524Julieann Magnusson: 410-365-2802

Online Agenda

9:00 – 9:30 am Arrival and Continental Breakfast
9:30 – 9:35 am Welcome & Introductions
Charlotte Cunningham-Rundles, MD, PhD
USIDNET Principal Investigator
9:35 – 9:45 am Overview of USIDNET Program / NIH Funding Opportunities for PIDD
Frosso Voulgaropoulou, PhD
USIDNET Program Scientist
9:45 – 10:00 am What is USIDNET? Overview and Progress
Charlotte Cunningham-Rundles, MD, PhD
USIDNET Principal Investigator
10:00 – 10:45  am Registry Overview, Updates, and Future Upgrades: A deeper dive into the numbers; Where USIDNET Registry is headed with REDCap and Why
Marla Goldsmith, USIDNET Registry Manager and
Tara Caulder, USIDNET Project Director
10:45 – 11:00 am Coffee Break
11:00 – 12:00 pm Use of USIDNET Data in Publications
Kathleen Sullivan, MD, PhD, USIDNET Co-Investigator – Moderator

Discussion: How Can USIDNET Help Fellows & FIT Programs
Discussion: Turning Abstracts into Manuscripts
12:00 – 12:45 pm New and Continuing Initiatives (Part 1): APS Type 1 & ADA SCID
Luigi Notarangelo, MD, USIDNET Co-Investigator– Moderator New Initiative: APS 1

Discussion: What is APS-1 and how can USIDNET help? (15 min)Mikhail Lionakis, MD, PhD, Chief, Fungal Pathogenesis Unit, NIAID/NIH

Discussion: APS-1 Patient and Community perspectives (15 min)
Jennifer Orange, Board of Directors, APS Type 1 Foundation
Continuing Initiative: ADA SCID

Discussion: ADA SCID in the USIDNET Registry (15 min) Donald Kohn, MD, Department of Pediatrics and MMP, UCLA
12:45 – 1:15 pm New Initiatives (Part 2): New Defects and New Directions

New Defects: PIK3CD, NFKB, STAT 3
Luigi Notarangelo, MD, USIDNET Co-Investigator
New Directions: IUIS Project, NICHD RFA
Kathleen Sullivan, MD, PhD, USIDNET Co-Investigator/PICONNECT Principal Investigator
1:15 – 2:00 pm Working Lunch with Discussion of Initiatives
Luigi Notarangelo, MD, USIDNET Co-Investigator– Moderator

Discussion: Expanding the role of the Disease Specific Working Groups
2:00 – 2:05 pm Immune Deficiency Foundation (IDF) Research Grant
Marcia Boyle, Immune Deficiency Foundation, President and Founder 
2:05 – 2:30 pm Following Infants with Low Lymphocytes: FILL project goals & progress
Jennifer Puck, MD, USIDNET Co-Investigator
Luigi Notarangelo, MD, USIDNET Co-Investigator
2:30 – 3:00 pm USIDNET Contributors: Making the Best Registry
Charlotte Cunningham-Rundles, USIDNET Principal-Investigator– Moderator
Kathleen Sullivan, MD, PHD, USIDNET Co-Investigator– Moderator

Buffy Garabedian, Connor Wakefield, Mary Ruehle
3:00 – 3:15 pm Break
3:15 – 4:00 pm Involving Patients in USIDNET: PI CONNECT & PROMIS 29 QOL
Kathleen Sullivan, MD, PhD, USIDNET Co-Investigator / PI CONNECT Principal Investigator
Christopher Scalchunes, IDF Vice President of Research / PI CONNECT Co-investigator
Julieann Magnusson, IDF Research Coordinator

Discussion: How to Involve Patients Locally
Kathy Owl Green, John Boyle, Elizabeth Secord, Rebecca Marsh, Karin Chen, Morna Dorsey, Jennifer Leiding
Discussion: Use of Social media
FIT chairs and other experts
4:00 – 5:00 pm Working with Industry: Another Model
Ramsay Fuleihan, MD, USIDNET Co-Investigator– Moderator

Shire Awardees
Sarah Barmettler, MD; Avni Joshi, MD; Edith Schussler, MD, PhD
5:00 – 5:30 pm Industry as Our Partner and New Initiatives
Charlotte Cunningham-Rundles, MD PhD, USIDNET Principal Investigator– Moderator

Discussion: What Works? What’s next?
Industry Partners: Chris Rabbat (Shire); Deborah Galinas and Carol Dagney (Grifols); Ann Bulinger (CSL Behring); Michelle Park (ADMA Biologics); Kristine David, Nadia Salem, and Joseph Wiley (Sigma Tau)
5:30 – 5:45 pm Education: Summer School, Visiting professors and Scholars, and More
Charlotte Cunningham-Rundles, USIDNET Principal-Investigator
Kathleen Sullivan, MD, PHD, USIDNET Co-Investigator
5:45 – 6:00pm Repository
Jennifer Puck, MD USIDNET Co-Investigator
6:00 – Dinner: Discussion 
USIDNET Physician Survey: What do you want to see from us? How do you want to see it?