title: Donor human milk bank data collection in north america: an assessment of current status and future needs.
abstract: BACKGROUND
  The Human Milk Banking Association of North America (HMBANA) is a nonprofit association that standardizes and facilitates the establishment and operation of donor human milk (DHM) banks in North America. Each HMBANA milk bank in the network collects data on the DHM it receives and distributes, but a centralized data repository does not yet exist. In 2010, the Food and Drug Administration recognized the need to collect and disseminate systematic, standardized DHM bank data and suggested that HMBANA develop a DHM data repository.
  
  
  OBJECTIVE
  This study aimed to describe data currently collected by HMBANA DHM banks and evaluate feasibility and interest in participating in a centralized data repository.
  
  
  METHODS
  We conducted phone interviews with individuals in different HMBANA milk banks and summarized descriptive statistics.
  
  
  RESULTS
  Eight of 13 (61.5%) sites consented to participate. All respondents collected donor demographics, and half (50%; n = 4) rescreened donors after 6 months of continued donation. The definition of preterm milk varied between DHM banks (≤ 32 to ≤ 40 weeks). The specific computer program used to house the data also differed. Half (50%; n = 4) indicated that they would consider participation in a centralized repository.
  
  
  CONCLUSIONS
  Without standardized data across all HMBANA sites, the creation of a centralized data repository is not yet feasible. Lack of standardization and transparency may deter implementation of donor milk programs in the neonatal intensive care unit setting and hinder benchmarking, research, and quality improvement initiatives.
authors.affiliation: 1The Connecticut Human Milk Research Center, Division of Neonatology, Connecticut Children's Medical Center, Hartford, CT, USA.
authors.forename: Elizabeth A
authors.initials: EA
authors.lastname: Brownell
authors.forename: Mary M
authors.initials: MM
authors.lastname: Lussier
authors.forename: Victor C
authors.initials: VC
authors.lastname: Herson
authors.forename: James I
authors.initials: JI
authors.lastname: Hagadorn
authors.forename: Kathleen A
authors.initials: KA
authors.lastname: Marinelli
mesh_terms: D003625:Data Collection / Q000379:methods* / Q000592:standards / Q000706:statistics & numerical data; D016208:Databases, Factual; D005240:Feasibility Studies; D019538:Health Care Surveys; D006801:Humans; D007407:Interviews as Topic; D017784:Milk Banks / Q000458:organization & administration*; D020380:Needs Assessment; D009656:North America; D014019:Tissue Donors / Q000706:statistics & numerical data
keywords: Human Milk Banking Association of North America; breastfeeding; human milk; milk bank; public health surveillance