http://www.raredr.com/news/morgans-fund-creates-first-natural-history-registry-for-necrotizing-enterocolitis
Morgan's Fund Creates First Natural History Registry for Necrotizing Enterocolitis

Andrew Black

The Morgan Leary Vaughan Fund (Morgan’s Fund) has created and initiated the first natural history registry for the inflammatory disease necrotizing enterocolitis (NEC).
 
The NEC registry is in collaboration with NORD.
 
The created NEC registry will be directed to those involved with the inflammatory disease such as patients, families and/or caretakers along with NEC neonatologists, clinicians. Those enrolling in the registry will allow to give details on their experience and disease progression with NEC and help provide better research for the treatment of the disease.
 
“Our goal is to enroll as many patients, or their parents or legal guardians, as possible. The success of the registry is dependent upon community participation” said Stephanie M. Vaughan, Co-founder and President, Morgan’s Fund.
 
The registry will consist of electronic surveys accepted worldwide and the data is made anonymous.
 
Funding for the registry is supported by NORD and the U.S FDA.
 
For more information on the registry or to enroll, visit https://www.necregistry.org/.

About Morgan Leary Vaughan Fund

According to the Morgan Funds website, 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.

About Necrotizing Enterocolitis

Necrotizing enterocolitis (NEC), which typically occurs in the second to third week of life in premature, formula-fed infants, is characterized by variable damage to the intestinal tract, ranging from mucosal injury to full-thickness necrosis and perforation.
 
In premature infants, onset of NEC is typically during the first several weeks after birth, with the age of onset inversely related to gestational age at birth. In term infants, the reported median age of onset is 1-3 days, but onset may occur as late as age 1 month.
Initial symptoms may be subtle and can include: vomiting, diarrhea, delayed gastric emptying abdominal distention, abdominal tenderness, or both Ileus/decreased bowel sounds, abdominal wall erythema (advanced stages), and or hematochezia.
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