NEC Society

Cycle 1
Patient-Partnered Collaboration
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Necrotizing enterocolitis (NEC) is an intestinal disease that primarily affects premature and medically fragile infants. NEC causes an inflammatory process that can lead to intestinal tissue damage.

Last updated 04/30/2025

Clinical
Disease Class
Abdominal surgical diseases
Gastroenterological diseases
Body Systems
Digestive
Organs
Brain
Intestines
Kidneys
Known Genetic Link
No, the disease is not known to have a genetic basis
causative_genes
None specified / unknown
contributory_genes
None specified / unknown
Type of Inheritance
Not specified / unknown
Newborn Screening
No
Disease Mechanism(s)
Other
Age of Onset
Infancy (age 0-1)
Average Age at Diagnosis
Infancy (age 0-1)
Life Expectancy
Adolescence (12-17)
Adulthood (age 18-64)
Early childhood (age 1+-5)
Elderly (age 65+)
Infancy (age 0-1)
Middle childhood (6-11)
Affected Sex(es)
Female
Intersex
Male
National Prevalence
1001-10000
Global Prevalence
1001-10000
National Incidence
101-1000
Global Incidence
1001-10000
Populations and/or ancestry with higher prevalence
NEC appears to occur less frequently among pre-term infants from Japan, Switzerland, and Austria while afflicting pre-term infants more often in North America, the United Kingdom, and Ireland; higher incidence in Hispanics and non-Hispanic Blacks as compared to non-Hispanic Whites.
Symptoms / Phenotypes
abdominal swelling
bloody stool
diarrhea
feeding difficulties
vomiting / nausea
Biomarkers
None
Existing Therapies
None
Organizational & Research
Cell Lines
Not specified / unknown
Cell Lines, Institution
Not specified
Cell Lines, share
Unsure
Disease Model
Not specified / unknown
Disease Model, share
Unsure
Clinical Trial Role
Not involved
Biobank, Institution
University of North Carolina (UNC)
Biobank, Involvement
Consulted
Funded
Center of Excellence, Institution
None
Registry
Yes, we have a registry that we created
Data Collected, Registry
Longitudinal natural history data
Patient contact info
Patient-reported data
Data Entered by, Registry
Patients
Platform, Registry
IAMRARE
Natural History Study
No, we do not have a natural history study, but we plan to create or collaborate on one
FDA Patient Listening Session
No
FDA Patient-Focused Drug Development (PFDD) Program
No
ICD Codes
Yes, we have an ICD-11 code specific to our exact disease
Diagnostic Guidelines
No
Science Advisory Board Policies
Yes, willing to share SAB policies
Research Network Policies
Has CRN and willing to share policies
Research Roadmap
Yes we have a Research Roadmap, and will share policies
International Chapters
None
International Partners
Europe
South America