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Jan. 9, 2017

TOPIC: Patients & Members, Press Releases, Research

First Natural History Registry for Necrotizing Enterocolitis

Posted by Jennifer Huron

Naugatuck, CT, and Danbury, CT, January 09, 2017—The Morgan Leary Vaughan Fund (Morgan’s Fund) has launched the first natural history registry for Necrotizing Enterocolitis (NEC)–an inflammatory disease that leads to necrosis of the intestine. NEC currently has no cure.

“The Natural History Registry for Necrotizing Enterocolitis (NEC Registry) will provide a complete picture of each patient’s experience with NEC,” said Stephanie M. Vaughan, Co-founder and President, Morgan’s Fund. “The NEC Registry is a platform for every baby (be they living or deceased), every family affected by NEC to help shape future research in NEC. It is a unique opportunity to drive this research to answer their unanswered questions and find a cure.”

To drive awareness and participation, Morgan’s Fund will promote the registry via mass media. Morgan’s Fund will target patients and their families or caretakers, and relevant NEC experts including neonatologists, clinicians and researchers.

“Our goal is to enroll as many patients, or their parents or legal guardians, as possible,” said Ms. Vaughan. “The success of the registry is dependent upon community participation.”

The NEC Registry is a natural history study registry that consists of electronic surveys to collect information about the patient experience and disease progression. Patients, or their caregivers or guardians can enter information from anywhere in the world. The data is made anonymous and stored securely in an online portal called a registry. Morgan’s Fund may share the data but not your personal identifying information with individuals or institutions conducting research or clinical trials, as approved by the study’s governing board that includes scientists, doctors and patient advocates.

Morgan’s Fund is launching the NEC Registry in collaboration with the National Organization for Rare Disorders (NORD), an independent charity that built its natural history study platform as part of its mission to help identify and treat all 7,000 rare diseases. Funding is supported by a cooperative agreement between NORD and the U.S. Food and Drug Administration (FDA). The FDA has praised NORD’s program as a helpful tool “that protects the security and privacy of personal information, while making valuable information available to a researcher or drug developer interested in creating a new therapy for a rare disease.”(1)

NORD President and CEO Peter L. Saltonstall said, “NORD’s natural history studies platform empowers patients and families to drive research and eliminate some of the unknowns that still exist in rare diseases. We are glad to be working with our Member Organization on this project and thank the FDA for its support and ongoing commitment to help people with rare diseases.”

• NEC is a rare disorder that is predominately due to prematurity.
• NEC is the second leading cause of death in premature infants. (2)
• NEC is the 8th leading cause of death during the newborn period (the first 28 days of life) in the United States. (3)
• NEC occurs in approximately 25,000 American babies per year. (4)

For more information, visit NECregistry.org

About The Morgan Leary Vaughan Fund
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 the potentially devastating effects it can have on preemies and their families, 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. Morgan’s Fund is a proud member of the National Organization for Rare Disorders and the Preemie Parent Alliance.

About National Organization for Rare Disorders (NORD)
An independent 501(c)(3) nonprofit organization, NORD is the leading advocacy organization representing all patients and families affected by rare diseases in the U.S. Established in 1983, NORD is committed to the identification, treatment and cure of the 7,000 rare diseases that affect 30 million Americans, or 1 in every 10 people, through programs of advocacy, education, research, and patient/family services. In addition to educational resources for patients, families, medical professionals and students available on its website (www.rarediseases.org), NORD represents 250 member organizations and collaborates with many others in specific causes of importance to the rare disease patient community.

Contact

For Morgan’s Fund:
Mary L. Midolo
Registry Administrator
NECregistry@morgansfund.org or +1-203-606-4873

For NORD:
Jennifer Huron
jhuron@rarediseases.org or 203-304-7258

Footnotes:
1. Woodcock, J. “The more we know about rare diseases, the more likely we are to find safe and effective treatments.” FDAVoice (Oct. 23, 2014)
2. UC Davis Health System. Newsroom. All Probiotics Are Not the Same in Protecting Premature Infants from Common, Life-threatening Illness. UC Davis Health System. University of California, Davis, Health System, 17 Oct. 2013. Web
3. Heron M. Deaths: Leading Causes for 2012. Nation vital statistics reports; vol 62 no. 10. Hyattsville, MD: National Center for Health Statistics. 2015.
4. “Necrotizing Enterocolitis (NEC).” www.pediatricsurgerymd.org. The American Pediatric Surgical Association. n.d. Web. 24 January 2016
http://www.pediatricsurgerymd.org/AM/Template.cfm?Section=Conditions&template=/CM/ContentDisplay.cfm& ContentID=4298

Hummingbird IRB Approved 12/21/2016.

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