Naugatuck, Connecticut, October 3, 2017—The Morgan Leary Vaughan Fund (Morgan’s Fund) today announced that three new surveys are open on the Natural History Registry for Necrotizing Enterocolitis (NEC Registry). The surveys encompass the neonatal (newborn) period, feeding, and Necrotizing Enterocolitis (NEC) diagnosis and treatment.
The NEC Registry is a collaborative effort between Morgan’s Fund and the National Organization for Rare Disorders (NORD) to study 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 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 ensures that data privacy and confidentiality are strictly maintained. Participation in the NEC Registry is free and voluntary, and participants may withdraw at any time.
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 for the NEC community. Participation is especially vital given the rarity of NEC—every patient experience is a unique and invaluable part of the natural history of NEC.
For more information or to join, visit NECregistry.org
About Necrotizing Enterocolitis
Necrotizing Enterocolitis (NEC) is a rare, inflammatory disease that leads to necrosis (death) of the intestine. It is predominately due to prematurity and its statistics are startling. NEC is the second leading cause of death in premature infants. NEC is the 8th leading cause of death during the newborn period (the first 28 days of life). NEC affects about 9,000 of the 480,000 infants born preterm each year in the United States. All newborn infants born preterm or born with a low birth weight (less than 5.5 pounds) are at increased risk for NEC. The smaller the infant or the more premature the delivery, the greater the risk.
(Sources: UC Davis Health System, CDC/NCHS, and NICHD.)
About The Morgan Leary Vaughan Fund
The Morgan Leary Vaughan Fund emerged (Morgan’s Fund) from a need to establish a mechanism for:
- Disseminating credible and timely information about NEC to parents whose infants are most at risk for developing NEC
- Raising the level of public awareness about NEC and the potentially devastating effects it can have on infants and their families
- Advancing research to prevent, diagnose, treat, and ultimately, cure NEC
Currently, it is headquartered in Naugatuck, Connecticut and has a satellite office in Austin, Texas.
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 disorders through programs of education, advocacy, research, and patient services.
CONTACT: Mary L. Midolo, Registry Administrator, NECregistry@morgansfund.org or +1 (203) 606-4873