07.12
Toddler helped by stem cells (Denver Post, 2009)
By Amy Price PhD
Chloe Levine is another one of the children in the Duke University study who has shown pronounced improvement of cerebral palsy after treatment with her own umbilical cord. There have been multiple questions from parents on cord banking and the advantages of banking umbilical cords. This is a follow up on the Dallas Hextell story
It should be noted that if you choose to private bank there may be issues with transporting the cord cells across state lines or out of the country both with safe transport for the cells and with legal issues. There is also a great deal of expertise needed to bring the cells back from a frozen state to where they will be of use to grow out healthy stem cells. It may be best to check carefully in these areas to avoid complications later on down the road if the cells are needed and you have relocated.
For those that have questions on using donated umbilical cords I have found stem cell companies that claim postitive results but I have not been able to locate peer reviewed research on children or large animals for this area. This does not mean they do not exist as the stem cell research arena grows daily so if anyone has cerebral palsy stem cell therapy research using other means I would be happy to add this
Dr Frances Verter of Parent’s Guide to Cord Blood Foundation graciously helped us out with some answers. This site has excellent in depth information.
Dr. Amy Price wrote:
It is not clear if children whose cord blood is stored in a public bank will have access to their own cord blood should the need arise. Could you please elaborate on this? Obviously unless the disease is genetic it would make sense to use own donor supplied cells….There is a mail in component but this does not make it clear how a parent would take these steps ….please advise, we get a lot of parents asking about this
Dear Amy,
The “consent” form signed by the mother when they donate to a
public bank makes it very clear that they are giving up all
ownership or rights to the cells.
Will the parents be able to donate?
Only IF
1) IF they are delivering the baby at a hospital which collects
for a public bank
2) IF they deliver during whatever hours the public bank operates
(sometimes only day shift)
3) IF the mother passes the maternal history screening
4) IF they register early enough
Will they get them back should a need arise?
Yes, but only IF:
1) IF the cells were not discarded. Typically 60% of donations
to public banks are discarded, usually because of low volume, other
reasons could be infectious disease testing, etc.
2) IF the cells have not been released to someone else.
A lot of parents have the misguided idea that donation is a cheap
way to preserve for themselves. They should not think in those terms.
Donations is an altruistic act.
There is only one bank which accepts mail-in donations,
Cryobanks Intl in Florida. I have heard that their rejection
rate is very high, because on top of sample size there is also
shipping time issues. Here is their enrollment form:
http://www.cryo-intl.com/enroll/donating/
I hope this helps,
Fran Verter
I was wondering if you could elaborate on legal issues pertaining to transport across state lines? I hadn’t heard of this being an issue before, and it was my understanding that a large number of private banks often store in states other than where their offices are located and/or cord blood collected. Are there particular states which have particular prohibitions on exporting?
Thanks for any further information.
Hi Matt,
I was told this numerous times by a stem cell company based in Colorado. From my contact with universities active in bone marrow and skin stem cell research I am not sure the information is accurate. I will call the FDA and ask them. It seems to me there would be no way to match organ recipients, blood types or marrow for other needs if this was the case.
Perhaps the issue was them growing stem cells out in various culture media and then reinserting as the harvesting of the cells at safe times and the media even if media separately met FDA safety standards, the concern that the interaction may be unpredictable may be the issue…it seems to me that there are some restrictions even for fertility clinics on how the embryos are grown as this can alter the DNA, since about 98% of DNA is not fully coded and research is pointing to this being the part of the DNA that is involved with regulation and growth which may be the cause for concern with grown out stem cells …If the FDA says something different I will post what I learn…Thanks for bringing this to my attention
Talked to the FDA about stemcells and asked them about storage. This page is very helpful in regards to regulations. Storage seems OK but apparently growing out cells has been regulated since 1995 and their proceedings on this are available online. The regulation 1271 link here http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfcfr/CFRSearch.cfm?CFRPart=1271 For safety reasons things like direct transfer of cells and atificial insemination are considered safe practice of medicine whereas growing out these cells whether in a fertility clinic or Drs office is regulated although any dr or organization can apply on an individual basis for a compassionate exception.