Louisiana has state legislation around cord blood education that follows the Institute of Medicine guidelines and mandates/encourages physicians to educate expectant parents about ALL forms of cord blood banking. The Louisiana bill was enacted 12 June 2008 and became effective 15 Aug. 2008.
- What questions should parents ask a Family Bank about the Storage Facility?
- What type of records do parents receive after storage?
- Does your contract state that the storage fee is fixed, or may it increase later?
- Does the bank reserve the right, in your contract, to change storage facilities?
- Does the bank operate their own storage facility, or is it provided by another laboratory?
- What type of accreditation or other certifications does the storage facility carry? In most banks the cord blood is stored in the lab where it was processed, and the accreditation of the lab covers the storage conditions.
- What is the geographic location of the storage facility: Is it at risk for hurricanes, earthquakes, or other natural disasters?
- What type of back-up systems does the storage facility have in case of power failure?
- What type of security systems does the storage facility have?
- Are related donors better for transplants?
The overall answer is yes, but this is a complex topic.
The two important measures of patient outcome are: long-term survival, and the impact on quality of life from graft-versus-host disease (GvHD). Sibling donors tend to trigger less GvHD. Also, sibling donors are available faster than searching for an unrelated donor, and patients have better survival when they go to transplant faster after diagnosis.
The exact comparison of outcome between sibling or unrelated donor varies with the patient diagnosis. The NMDP website has a page on this, with numerous references. For many cancers the outcomes are comparable, although sibling donors have a slight edge. The largest study was by Weisdorf et al. 2002, for over 2900 patients with CML leukemia. When correcting for all other factors, the survival with sibling donor vs unrelated donor was 68% vs. 61%. Sibling donors show a significant improvement for pediatric cord blood transplants of hereditary disorders. The European Blood and Marrow Transplantation Group (EBMT) reported 3 year survival rates of 95% from a sibling donor vs. 61% from an unrelated donor.
Weisdorf, D.J. et al. Blood 2002; 99:1971-1977.
Bizzetto, R. et al. (EBMT) Haematologica 2011; 96(01):134-141
- Why is it important to ship cord blood with a special courier?
The Parent's Guide to Cord Blood Foundation recommends shipping with a courier that has a division specializing in "Life Sciences" transport. This helps to insure that your critical shipment is not misplaced, arrives promptly, and is maintained within the acceptable temperature range during transport from the hospital to the lab.
The first priority for parents to consider is the cord blood shipping time: Once the cord blood is harvested, the blood cells and stem cells gradually begin to die. Public cord blood banks set a limit of 48 hours on the time between birth and processing the blood for cryogenic storage. It would be a "best practice" if family banks also followed the 48 hour window.
The second priority for parents to consider is the cord blood shipping temperature: The standard procedure for transporting fresh cord blood is to keep it within an ambient temperature range of 15 °C (59 °F) to 25 °C (77 °F). Priority shipping services may guarantee the arrival time, but not the temperature conditions during transit. The cord blood might get too hot or too cold while sitting in the back of a truck, on a loading dock, or in the cargo hold of an airplane. A specialty courier with Life Sciences expertise will carry the cord blood in a controlled environment.
Parents can improve the survival of their child's cells during transit to the cord blood laboratory by selecting a family bank that provides a well insulated shipping container and that provides a specialty courier who maintains the shipment within the desired temperature range. In many countries it is standard practice for the shipping container to have a temperature logger.
In the United States, the post 9/11 security requirements of the Transportation Security Administration (TSA) require that specialty couriers can only offer cord blood shipping through those cord blood banks that are registered with the TSA as a "Known Shipper". Before 9/11, specialty couriers could market their services directly to consumers, and in some countries this is still possible. Parents should check if a Family Bank offers specialty courier services before they sign a contract.