Duke vs. University of Minnesota

Big decisions: I think we are currently leaning toward Univ of MN, but deciding on the right place is tough. We have criteria beyond what is listed below that incorporate a lot of care coordination needs and multi-specialist care, beyond just the transplant itself. This is still not a fully developed summary, but here is a brief comparison of the Duke and University of Minnesota programs:


Duke:

• Heavily favor cord blood over bone marrow for transplantation
• Do not offer combination ERT/transplant. They have a clinical rationale for this.
• Experience: Transplanted >50 young children with MPS I and >160 children with metabolic diseases
• 85% transplant survival rate

University of Minnesota:

• Offer both cord blood and bone marrow for transplantation
• Start ERT prior to transplant, in an attempt to head off non-neurological deterioration while searching for a cord blood / marrow donor match
  
• Transplanted >80 kids with MPS I. Not sure of other metabolic patient transplant experience.
  
• 88% transplant survival rate

Tomorrow Sarah and Jimmy will be talking to the transplant physician, so they'll have an opportunity to ask questions, and discuss the pluses and minuses of combination ERT/ transplant treatments. We'll also try to catch up with Duke tomorrow to find out more about the treatment philosophy there.