Use of a precious resource: parental decision making about using autologous umbilical cord blood in studies involving young children with type 1 diabetes.

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.