About

The National TBI Registry Coalition (NTRC) is a collaborative alliance of nonprofit and corporate organizations dedicated to working with the federal government to create a national registry for individuals living with a traumatic brain injury (TBI).

The NTRC seeks to improve surveillance and prevention opportunities, as well as provide easily accessible information for individuals and families to address TBI, including where to seek care, opportunities for clinical trials, and advances in scientific research.

Additionally, the NTRC supports a national TBI registry to share information about services and therapies to address co-morbidities commonly experienced by individuals with TBI.

As leaders in the TBI community, NTRC member organizations are working together to promote public awareness about TBI, and the impact they have on individuals and families.

In November 2021, eight leading nonprofit and corporate organizations have formed the National TBI Registry Coalition (NTRC): Abbott, American Congress of Rehabilitation Medicine, American College of Radiology, International Brain Injury Association, National Football League Players Association, North American Brain Injury Society, Philips, and SanBio. As leaders in the TBI community, NTRC member organizations are working together to promote public awareness about individuals and families impacted by TBI.

Only 14 states have some form of a registry for TBI. This is a decentralized system in which certain states have developed and managed their own registries. Most individuals with a TBI live in states without a registry and therefore may not be recorded in a registry or database. A limited number of registries in a select number of states creates a geographic disparity in care for patients. Thus, individuals with brain injury, do not have equal access to information about treatments and are not all included in the design and evaluation of programs and research to further benefit the community.

This coalition seeks to join industry partners, nonprofit organizations, and other advocacy groups to amplify collective voices around a common goal to improve reporting and equalizing access to services and therapies for individuals living with a brain injury.

Co-Chairman: David Arciniegas, MD, Chairman and CEO of International Brian Injury Association (IBIA); Member, NABIS

Co-Chairman: Dhiraj Pisal, New Business Creation Leader, Philips

Secretary: Keita Mori, CEO, SanBio

Rosalyn Kumar, Senior Director, Abbott

Etta Pisano, MD, Chief Science Officer, American College of Radiology (ACR)

Stacy Shade-Ware, Director, BrainLine

Libby Nicholaou, Outreach Operations, Love Your Brain

Sean Sansiveri, General Counsel and Head of Business Affairs, National Football League Players Association (NFLPA)

Mariusz Ziejewski, PhD, Chairman, North American Brain Injury Soceity (NABIS)

Katherine Snedaker, Executive Director and Founder, Pink Concussions

Lynne Becker, CEO and Founder, Power of Patients

Gavin Attwood, Board Member, United States Brain Injury Alliance (USBIA), CEO, Brain Injury Alliance of Colorado (BIAC)

NTRC Executive Director: Julie Pawelczyk, Vice President, The Conafay Group

NTRC Director: Stephanie Kolakowsky-Hayner, President-Elect, American Congress of Rehabilitation Medicine (ACRM)

NTRC Manager: Kristen Lafayette, Research Associate, The Conafay Group

NTRC Outreach Coordinator: Yasmine Sadoudi, Research Associate, The Conafay Group