NEC Society
Cycle 1
Patient-Partnered Collaboration
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 May 2024
Clinical
Disease Class
Rare abdominal surgical diseases
Rare gastroenterological diseases
Body Systems
Digestive
Organs
Brain
Intestines
Kidneys
Genes
None specified / unknown
Type of Inheritance
Not specified / unknown
Disease Mechanism(s)
Unknown
Age of Onset
Infancy (age 0-1)
Incidence
1001-10000
Prevalence
1001-10000
Populations and/or ancestry with higher prevalence
NEC affects black infants more than white infants.
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, location
Not specified
Cell Lines, share
N/A
Disease Model
Mouse
Pig
Disease Model, location
Not specified
Disease Model, share
No
Clinical Trial Role
Not involved
Biobank
University of North Carolina (UNC)
Center of Excellence
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
Other
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
Clinical/Treatment Guidelines
No
Organizational Roles
Executive Director
Research/Scientific Director
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