NEC Registry


Promote research for Necrotizing Enterocolitis (NEC), join the NEC Registry.

We are pleased to announce the NEC Registry, a collaborative effort between The Morgan Leary Vaughan Fund (Morgan’s Fund) and the National Organization for Rare Disorders (NORD) to study Necrotizing Enterocolitis (NEC). Morgan’s Fund was selected by NORD to create the NEC Registry as part of a cooperative project between NORD and the U.S. Food and Drug Administration (FDA) that supports research on rare diseases and how they progress over time—natural history studies.

OVERVIEW OF RESEARCH STUDY

The NEC Registry is more than a versatile online system that securely collects and stores data for medical research; it is a dynamic participant-driven resource that can empower and unite the NEC community through shared knowledge. Registry participants not only can complete surveys about their own disease experiences, but also can learn about other participants’ experiences by viewing aggregated survey data. As the registry sponsor, Morgan’s Fund will ensure that data privacy and confidentiality are strictly maintained. Participation in the NEC Registry is free and voluntary, and participants may withdraw at any time.

COMMUNITY INVOLVEMENT

The NEC Registry is a powerful opportunity for individuals with NEC and their family members to contribute directly to research that will enhance our understanding of NEC, thus facilitating the development of new diagnostic and treatment options. Participation is especially vital given the rarity of NEC—every patient experience is a unique and invaluable part of the natural history of NEC.

Click HERE and download a free brochure about NEC and the NEC Registry.

For further information or to join, please contact: Mary L. Midolo, Registry Administrator, [email protected], +1 (203) 808-0874 or www.NECregistry.org

About The Morgan Leary Vaughan Fund

(Morgan’s Fund) is an all-volunteer, public charity dedicated to Necrotizing Enterocolitis (NEC). Its mission is to promote public awareness about NEC, and to advance research to prevent, diagnose, treat, and ultimately, cure NEC. Named after Morgan, it celebrates his survival, courage and strength.

Morgan and his twin brother were born at 28 weeks, one day gestation—nearly three months early—each weighing less than 2.5 pounds. At four days old, Morgan developed NEC and lost approximately 20% of his small intestine. Morgan not only survived but also has thrived since his bout with NEC. This is his family’s way of paying it forward.

About NORD

NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 250 patient organization members, is committed to the identification, treatment, and cure of rare

Click HERE and download a free brochure about NEC and the NEC Registry.