Cord Blood Registries: Valuable asset, or scam?

[lleeder]

Dr.Steve, cord blood registry is it worth the cash or just a scam?

[Dr Steve]

Dr.Steve, cord blood registry is it worth the cash or just a scam?

Turns out it can be a real benefit; studies show that kids with leukemia that get a cord blood transplant do very well. I've included the abstract from an article on this below. It's pretty dense, but basically says it's a useful alternative to traditional therapy.

Now, having said that, what are the odds that you'll need it?

The prevalence of childhood leukemia is 4 in 100,000 kids. So your odds of needing cord blood for your kid is 1 in 25,000. Cord blood costs $90/year to store, plus an entry fee of around $400 as I recall.

I thought about this a lot when I had my kids; we did it, because although the odds we will need it are low, they aren't zero, and I figured I'd hate to be the guy who didn't put the money up front only to wish I'd done it later.



Bone Marrow Transplant. 2008 Jun;41 Suppl 2:S80-2.

Indications and results of cord blood transplant in children with leukemia.

Gluckman E, Rocha V; EBMT Paediatric, Acute Leukemia Working Parties; Eurocord.

Eurocord Hematology Department, APHP University Paris VII, Paris, France.
elaine.gluckman@sls.aphp.fr

Umbilical cord blood transplant (UCBT) is now used more frequently for
transplanting children with high-risk malignancies. The advantages are the rapid
availability of donor cells, the possibility of using HLA-mismatched transplants
and the decreased risk of acute and chronic GvHD. The Eurocord registry has
collected and analyzed data on unrelated CBTs performed in European Blood and
Marrow Transplant Group (EBMT) and non-EBMT centers. The literature shows that
after UCBT relapse rate (RR), disease-free survival and overall survival of
children with acute leukemia are similar to other hematopoietic stem cell sources
(matched unrelated BM). Disease status at the time of transplantation is found in
several studies to be a very important determinant of long-term outcome. In
conclusion, UCB is a valuable alternative source of hematopoietic stem cell
transplantation in children with acute leukemia who need an allogeneic
transplant, but lack a suitable sibling donor.

[Thebazile78]

Two follow-up questions:

(1) Is there a cord-blood registry where, like the National Bone Marrow Registry, if you didn't need to use the cord blood you'd stored (or costs became prohibitive for you to continue to pay for storage) it could at least be used to help someone else so your initial investment wouldn't go to waste? Or is it so type-specific that it's only good for your kid?

(2) How long is cord blood good for? Indefinitely? Or is there a shelf-life?

Thanks!

[sailor]

using your numbers, if everyone did this it would cost over $12 million for every kid helped by it. doesn't sound beneficial/cost-effective to me.

[~Katja~]

I did it for my son. I felt the money spent for it was very little compared to the benefit he could have from it.

[~Katja~]

using your numbers, if everyone did this it would cost over $12 million for every kid helped by it. doesn't sound beneficial/cost-effective to me.

those numbers just compare the ratio for leukemia.
Diseases Treated with Stem Cells

Since 1988, doctors have been using cord blood in lifesaving treatments. Stem cell research holds so much promise that the number of diseases and injuries being treated is growing rapidly.
Current Stem Cell Applications
Leukemias , Lymphomas and other Blood Cancers

* Acute Biphenotypic Leukemia�
* Acute Lymphocytic Leukemia (ALL)
* Acute Myelogenous Leukemia (AML)
* Acute Undifferentiated Leukemia�
* Adult T Cell Leukemia/Lymphoma
* Chronic Lymphocytic Leukemia (CLL)
* Chronic Myelogenous Leukemia (CML)
* Hodgkin's Lymphoma
* Juvenile Chronic Myelogenous Leukemia (JCML)
* Juvenile Myelomonocytic Leukemia (JMML)
* Multiple Myeloma
* Myeloid/Natural Killer (NK) Cell Precursor Acute Leukemia
* Non-Hodgkin's Lymphoma
* Prolymphocytic Leukemia
* Plasma Cell Leukemia
* Waldenstrom's Macroglobulinemia

Other Cancers

* Brain Tumors��
* Ewing Sarcoma�
* Neuroblastoma
* Ovarian Cancer��
* Renal Cell Carcinoma��
* Rhabdomyosarcoma
* Small-Cell Lung Cancer��
* Testicular Cancer��
* Thymoma (Thymic Carcinoma)

Bone Marrow Failure Disorders

* Amegakaryocytosis
* Aplastic Anemia (Severe)
* Blackfan-Diamond Anemia
* Congenital Cytopenia�
* Congenital Dyserythropoietic Anemia
* Dyskeratosis Congenita
* Fanconi Anemia
* Paroxysmal Nocturnal Hemoglobinuria (PNH)
* Pure Red Cell Aplasia

Hemoglobinopathies

* Beta Thalassemia Major
* Sickle Cell Disease

Histiocytic Disorders

* Familial Erythrophagocytic Lymphohistiocytosis
* Hemophagocytosis
* Langerhans' Cell Histiocytosis (Histiocytosis X)

Myelodysplastic/Myeloproliferative Disorders

* Acute Myelofibrosis�
* Agnogenic Myeloid Metaplasia (Myelofibrosis)�
* Amyloidosis
* Chronic Myelomonocytic Leukemia (CMML)
* Essential Thrombocythemia�
* Polycythemia Vera�
* Refractory Anemias (RA) including:
o Refractory Anemia with Excess Blasts (RAEB)
o Refractory Anemia with Excess Blasts in Transformation (RAEB-T)
o Refractory Anemia with Ringed Sideroblasts (RARS)

Inherited Metabolic Disorders

* Adrenoleukodystrophy
* Fucosidosis
* Gaucher Disease�
* Hunter Syndrome (MPS-II)
* Hurler Syndrome (MPS-IH)
* Krabbe Disease
* Lesch-Nyhan Syndrome
* Mannosidosis�
* Maroteaux-Lamy Syndrome (MPS-VI)
* Metachromatic Leukodystrophy
* Mucolipidosis II (I-cell Disease)�
* Neuronal Ceroid Lipofuscinosis (Batten Disease)�
* Niemann-Pick Disease�
* Sandhoff Disease�
* Sanfilippo Syndrome (MPS-III)
* Scheie Syndrome (MPS-IS)
* Sly Syndrome (MPS-VII)
* Tay Sachs�
* Wolman Disease

Inherited Immune System Disorders

* Chronic Granulomatous Disease
* Congenital Neutropenia
* Leukocyte Adhesion Deficiency
* Severe Combined Immunodeficiencies (SCID) including:
o Adenosine Deaminase Deficiency�
o Bare Lymphocyte Syndrome
o Chediak-Higashi Syndrome�
o Kostmann Syndrome
o Omenn Syndrome
o Purine Nucleoside Phosphorylase Deficiency
o Reticular Dysgenesis
* Wiskott-Aldrich Syndrome
* X-Linked Lymphoproliferative Disorder

Other Inherited Disorders

* Cartilage-Hair Hypoplasia
* Congenital Erythropoietic Porphyria (Gunther Disease)
* DiGeorge Syndrome
* Osteopetrosis

Other

* Chronic Active Epstein Barr
* Evans Syndrome
* Multiple Sclerosis��
* Rheumatoid Arthritis��
* Systemic Lupus Erythematosus��
* Thymic Dysplasia

Emerging Stem Cell Applications��

* Brain Injury
* Cerebral Palsy
* Type 1 Diabetes
* Heart Disease

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also there is no known shelf life for cord blood so far.

[Dr Steve]

Two follow-up questions:

(1) Is there a cord-blood registry where, like the National Bone Marrow Registry, if you didn't need to use the cord blood you'd stored (or costs became prohibitive for you to continue to pay for storage) it could at least be used to help someone else so your initial investment wouldn't go to waste? Or is it so type-specific that it's only good for your kid?



Stem cells can be used by anyone, but you may have to trick the immune system into accepting them as "Self". ("Self" antigens are used by the organism to identify foreign objects from ones that are supposed to be there...this is related to why people have to take "antirejection" drugs when they have a heart transplant...the body recognizes the new heart as being "foreign". One of the goals of stem cell research is to be able to make an antigen-friendly heart (kidney, pancreas, etc) for a patient (either with no "self" or with the "self" of the person receiving the organ) so they can get a transplant without having to worry about rejection.)

Obviously it's more complicated than that, but there are indeed cord blood registries. Here's one of them:

http://www.nationalcordbloodprogram.org/





(2) How long is cord blood good for? Indefinitely? Or is there a shelf-life?

Thanks!

so far, no known shelf life. We'll see when some of these cord blood samples are thawed out in 20+ years.

[~Katja~]

so far, no known shelf life. We'll see when some of these cord blood samples are thawed out in 20+ years.

from what I read the "oldest" ones that were used so far were 15 years old and had no signs of being less "valuable" and efficient for treatment

[Thebazile78]

Stem cells can be used by anyone, but you may have to trick the immune system into accepting them as "Self". ("Self" antigens are used by the organism to identify foreign objects from ones that are supposed to be there...this is related to why people have to take "antirejection" drugs when they have a heart transplant...the body recognizes the new heart as being "foreign". One of the goals of stem cell research is to be able to make an antigen-friendly heart (kidney, pancreas, etc) for a patient (either with no "self" or with the "self" of the person receiving the organ) so they can get a transplant without having to worry about rejection.)

Obviously it's more complicated than that, but there are indeed cord blood registries. Here's one of them:

http://www.nationalcordbloodprogram.org/


Makes sense, based on the fact that they have to eradicate your marrow cells before they do a bone marrow transplant, right? So you increase the chances of your body recognizing those cells as "self" cells rather than "foreign" cells and your immune system doesn't attack them.

Back to type-specificity - for stem cells, how much does it matter? I know that, for organs and bone marrow, they have to do type-specificity testing on all accepted donor organs/cells. I'd assume there's a similar typing process for cord blood cells, but with those, how specific do they need to be?

(Marrow cells are a type of stem cell, no? And I only know a bit more about marrow transplants/National Bone Marrow Registry because I have a friend who has leukemia and she had a marrow transplant at the end of 2007. She's been in remission for the past year.)


so far, no known shelf life. We'll see when some of these cord blood samples are thawed out in 20+ years.

Good to know on both counts. (Not like we're talking viability on stored embryos or anything, right???)

Cryonic storage is amazing, isn't it?

[kdubya]

We did it with our son's cord blood.

Hopefully we never need it, but I would hate to need it and not have it just because i wanted to save money.

Personally I can't do a cost benefit analysis with my sons future health and well being.

[WhistlePig]

I thought about saving mine but ended up donating it. Hoping that will bring good karma.

[sailor]

We did it with our son's cord blood.

Hopefully we never need it, but I would hate to need it and not have it just because i wanted to save money.

Personally I can't do a cost benefit analysis with my sons future health and well being.

you constantly do a cost-benefit analysis with every purchase you make. do i get car seat a or b, which have different levels of safety, etc.

[~Katja~]

you constantly do a cost-benefit analysis with every purchase you make. do i get car seat a or b, which have different levels of safety, etc.

the difference is you can buy another car seat or return it. Cord blood can only be banked at birth. You only get one chance.

[Sarge]

We did it, one of my daughters had a stroke at birth, and as a result suffers from right side hemiplegia, and epilepsy. Hopefully in the future her cord blood may be useful for her.

[sailor]

the difference is you can buy another car seat or return it. Cord blood can only be banked at birth. You only get one chance.

i understand it's a decision that has to be made right away, but buying a car seat can also result in your child living or dying and that's the comparison i was trying to make.

[WhistlePig]

We did it, one of my daughters had a stroke at birth, and as a result suffers from right side hemiplegia, and epilepsy. Hopefully in the future her cord blood may be useful for her.

So sorry this happened to your daughter. Hopefully she won't need it at all!!

[lleeder]

We decided to do it and just got the call that our sample is really good. Something like a good sample is 800 million and our daughters is a billion. Hope to never need it but glad we have it.

[ANC]

We decided to do it and just got the call that our sample is really good. Something like a good sample is 800 million and our daughters is a billion. Hope to never need it but glad we have it.

Glad to hear that lleeder, me and my wife are going to do it as well. It definitely seems worth it to us.

[Tall_James]

We decided to do it and just got the call that our sample is really good. Something like a good sample is 800 million and our daughters is a billion. Hope to never need it but glad we have it.

Nice! I guess when you cut the cord it was a clean slice!

[lleeder]

Actually I was never given the option to cut.