title: Use of a precious resource: parental decision making about using autologous umbilical cord blood in studies involving young children with type 1 diabetes.
abstract: OBJECTIVE
  To assess parental decision making and experiences in an autologous umbilical cord blood infusion study in young children with type 1 diabetes (T1D).
  
  
  METHODS
  Surveys were completed with 22 parents of children with T1D who received infusion and 22 parents who declined infusion.
  
  
  RESULTS
  Parents who stored umbilical cord blood were middle-aged, highly-educated, Caucasian, married, and privately insured. Parents of children who did not receive infusion declined because they did not want to deplete their cord blood supply. Parents of children who decided to have their children participate in the infusion study were similar on approaches to storing cord blood and attitudes about research as compared to parents who declined to have their children participate in the infusion. Parents of children who received infusion were positive about their experiences and held expectations that infusion would lead to a T1D cure.
  
  
  CONCLUSIONS
  The manner in which cord blood is stored needs to be considered so that participation in future studies does not risk depletion of the cord blood supply. In addition, it appears that the process of storing umbilical cord blood leads to restricted demographic characteristics of eligible participants, which may impact recruitment in clinical trials. These results are relevant to designing future cord blood studies in T1D and other non-malignant diseases.
authors.affiliation: Department of Medical Humanities and Social Sciences, Florida State University College of Medicine, Tallahassee, FL 32306–4300, USA. kimberly.driscoll@med.fsu.edu
authors.forename: Kimberly A
authors.initials: KA
authors.lastname: Driscoll
authors.forename: Suzanne Bennett
authors.initials: SB
authors.lastname: Johnson
authors.forename: Desmond A
authors.initials: DA
authors.lastname: Schatz
authors.forename: Michael J
authors.initials: MJ
authors.lastname: Haller
mesh_terms: D000328:Adult; D001771:Blood Banks; D001804:Blood Transfusion, Autologous; D002648:Child; D002675:Child, Preschool; D002755:Choice Behavior; D003922:Diabetes Mellitus, Type 1 / Q000628:therapy*; D005260:Female; D005312:Fetal Blood; D006801:Humans; D008297:Male; D010290:Parents / Q000523:psychology*; D017060:Patient Satisfaction / Q000706:statistics & numerical data; D045808:Refusal to Participate / Q000523:psychology*