PGD-IVF Experience Survey

Huntington's disease (HD) is a fatal genetically inherited neurodegenerative disease with no currently available disease-modifying treatment or cure. Each child born to a parent who carries the gene abnormality that causes HD has a 50% chance of inheriting the gene abnormality and therefore of having HD.

 

However, there is a family planning process available for couples affected or potentially affected by HD to ensure that their child will not have HD. It is called “preimplantation genetic diagnosis in-vitro fertilization,” or PGD-IVF. IVF is a relatively common procedure, often used to help women conceive, and involves removing eggs from a woman and fertilizing them (with a man’s sperm sample) outside of the body to create embryos; these embryos are then implanted in the woman’s uterus. The “PGD” aspect means that the embryos are tested for the HD gene before they are implanted, so that only embryos that do not have the mutation are transferred to the woman’s womb. If the transfer is successful, pregnancy carries on as usual and the fetus will not have the HD gene and cannot develop HD.

 

Although it is not as common, it is absolutely possible to undergo PGD-IVF without testing the prospective parents for HD. Therefore, people at risk of Huntington’s disease but who do not want to learn their gene status can still have HD-free kids.

 

PGD-IVF is a personal process, and one that is each individual’s or couple’s choice. In creating this survey, HDSA seeks input on the community’s thoughts about, or experiences with, PGD-IVF in order to better understand the needs of HD families considering this family planning option.

 

If you would like more information on family planning options and PGD-IVF before taking this survey, please click through these links.