PGD & HLA type

Dear all

I would like to inform you that i was searching for a medical center that can do Preimplantation Genetic Diagnosis (PGD ) for embryos as well as matching the HLA type.

I e-mailed doctors in Cyprus but said that they don't do the HLA typing as is is considered unethical in Cyprus.
I kept searching and found out (by the help of the PGD international society) a center that is specialized in what i wanted. They don't only make PGD for thalassemia but for other 60 genetic disorders. They are pionners in this. I e-mailed them and they seem very nice and helpful . They are also very flexible as you can go to them in Chicago or they can send you an embryoligist in your own country. The name of the center is the Reproductive Genetic Institue.

The funny thing is that they give you discount when you do PGD for the thal trait as they have done it several times and it has been studied quiet well 

Anyway i wanted to post these information in case that any one is looking for such centers and/or if any couple is planning to have baby and have a thal trait in the family

Take care

Manal

Good luck!  This procedure, other than gene therapy (some day..) is the best thing you can do for your child.  Cord blood from a matched sibling is your best bet.  You should contact dr. Krishnamurti who does a procedure using 'mixed chimerism' - which is less toxic than regular BMT - it does not require chemo.  I'm sure you realize chemo comes with its own risks including infertility.  So if you have an HLA matched sibling, cord blood and do the 'mixed chimerism' procedure with dr. krishnamurti - it may yield the best results. but research, research, research and get all of the information you need from the doctors.  Best of luck!

     You are really doing your research, Manal. This is good information for people to know. Are you going to work with someone in Egypt, or come to Chicago? Good luck in whatever you decide to do.  Love, Jean

which is less toxic than regular BMT - it does not require chemo.  I'm sure you realize chemo comes with its own risks including infertility. 

Dear Sharmin
Please, please, where is this doctor ? How can i reach him? How come he doesn't use chemo ? How shall he deteriorate the thal bone marrow without chemo? I never heard of this. I will be more than gratful if you tell me anything about this procedure which i hope it could apply to me. Please

Thanks alot

Dear Jean

Actually Jean i did not yet decide to do this. You know i am searching all possible solutions, making sure where is the place and cost of every thing,.....etc so that when i decide something i am ready.
What i have in mind now is to wait until summer ( since Ahmad ''seems'' fine) and send a blood sample to Dr. Susan Perrine to test the new oral medicine as i posted before in other posts. If it went well with him , so i will continue this way. I am thinking also to do this PGD so as to have another baby so as to work like a backup to his brother ( i know i sound rude and unethical ,but i am wishing to save my son and anyway both are my kids).
The only thing that was hindering me was the side of effect of the transplant which is infertility as it is a tough decesion and my son may blame me for it later. But when i read what shramin wrote about not using Chemo in this technique i am really surprised and wish it applies to me. If i did the PGD, i will do the IVF in Egypt ( luckly my cousin is the one responsible for the biggest IVF centers in Egypt with the highest percentages ), then i will do the PGD in Chicago.

This is exactly what i think about right now. So nothing is clear yet.

Love
Manal

Hi,
I spoke to a doctor today about PGD HLA. He said PGD to get a healthy baby is easy but PGD plus HLA typing is quite difficult. He said you could go through 100 IVF cycles and not get a 100% match to the affected sibling.
I came home ready to give up but decided to look it up online. Thought I would share what I found.


Of 54 PGD cycles performed simultaneously with HLA typing, 35 resulted in transfer of 55 unaffected
HLA-matched embryos (this was partially reported previously by Rechitsky et al., 2004). Of a total of 466
embryos tested, 435 showed conclusive results, of which 135 (31%) were predicted to be abnormal and 300
(69%) unaffected carriers or normal (Table 3). The HLA typing revealed 84 (19%) embryos to be identical to
the affected siblings, although only 65 (15%) were also unaffected, of which 55 developed appropriately to
be acceptable for transfer in 35 PGD cycles, resulting in seven unaffected HLA-identical pregnancies. One of
these pregnancies resulted in a stillbirth, the unaffected HLA-matched status of which was confirmed, and
five in the birth of unaffected HLA-matched children, with one pregnancy still ongoing at this time. Umbilical
cord blood was collected from these children at birth and transplanted to one of the affected siblings,
resulting in successful haematopoietic reconstitution.


This is from
http://www-biology.univer.kharkov.ua/seriesbiology/ukr/11%282010%29/pdf/95.pdf

If anyone has tried this or has any more information I would love to hear about it.

Zahra

I'll add this link to the discussion.

http://www.froedtert.com/specialtyareas/fertility/programs/

PGD for HLA matching

When a couple has a child with a disease that requires an HPC transplant, they learn that the optimal source of cells needed for transplant is an HLA-matched sibling. Donor cells need to be HLA-matched to an affected child to significantly decrease the chance that the transplanted cells will react against the child’s body (graft vs. host disease). Many of these children do not have an HLA-matched sibling, so their physicians look for an unrelated HLA-matched donor through the bone marrow registry and cord blood registry. Some couples have undertaken a pregnancy in the hope of having a child who is an HLA match to their affected child. With each pregnancy, these couples have a 1 in 5 chance of conceiving a child who is an HLA match to their affected biological child.

A new alternative is now available to couples using in vitro fertilization (IVF) to find an HLA match. Following IVF, preimplantation genetic diagnosis can be used for the purpose of HLA matching by selecting for and transferring only the embryos that are HLA matched to your affected child. Each embryo has a 1 in 5 chance of matching the affected biological child. With PGD, the goal is to select those embryos that are a match and transfer them. In this process, we can significantly increase the chance for a couple to have a child that is HLA-matched to the affected child.

Hi Andy
Thanks. This sounds alot more hopeful. The process is quite expensive so need to do alot more reseaerch into this.
Zahra

Zahra,

One thing I learned from watching a mom who used IVF to have a baby. Stay patient and don't let setbacks get you down. Her determination brought her a wonderful boy but it took perseverance.

Hi,
I have found out that IVF+PGD+HLA in Turkey costs about half of that in RGI.
Anybody have any idea how good they are?
Zahra