have the capacity to adjust its procedures and structure as necessary and appropriate to incorporate that emerging knowledge.
The committee also considered lessons learned in the process of building a network for facilitating solid transplantation, which are well documented and the subject of a previous Institute of Medicine (IOM) report, Organ Procurement and Transplantation: Assessing Current Policies and the Potential of the DHHS Final Rule (IOM, 1999). The committee attempted to learn from this history, to build on existing strengths and to avoid the previously identified pitfalls.
A single national network for access to all sources of HPCs (whether they be adult bone marrow, peripheral blood, or cord blood) would simplify some aspects of the transplantation process, including search efforts, outcomes data collection and analysis, research, and policy making. In fact, for adult donors (of either bone marrow or peripheral blood stem cells), a national network of donor registries and a process for efficient searches already exists and has been regularly strengthened. The National Marrow Donor Program (NMDP) receives substantial federal funding, maintains an informative Web site, provides access to adult donors (both in the United States and internationally), provides extensive patient and clinician support, and maintains a database to track transplant outcomes. It operates an extensive program and also provides statistical support for making these data, as well as statistical support, available for research. Furthermore, participation in this national network is predicated on adherence to standards of data quality, clinical performance, and responsiveness to inquiries. This network has also extended its activity into the cord blood transplant process.
However, the NMDP, as currently configured, is not a simple solution for cord blood banking. While many aspects to be performed by the proposed National Cord Blood Stem Cell Bank Network have analogs in the NMDP (e.g., searching, outcomes tracking, patient support) not all U.S. and few non-U.S. cord blood banks participate in the NMDP network,1 and the procurement and banking of donated cord blood are processes very different from those used to recruit and track potential adult donors.
The committee also heard anecdotal evidence that the NMDP’s infrastructure, while comprehensive, can also be unwieldy. Of particular concern to the committee were the reported delays some banks encountered when trying to get their inventory listed in the NMDP’s registry, both because of lack of compatibility from system to system, and because of lack of bank personnel to do the data entry and provide the information in a