
The Twin to Twin Transfusion Syndrome Foundation has been
compiling information about monochorionic twin and triplet
pregnancies for 9 years, since 1995.
This information is crucial in trying
to find a link between pregnancies and treatments. We ask
that you please help us continue our research by contacting
us for copies of the registry. You may call 800-815-9211 or
440-899-8887 as well as use the e-mail link below:
research@tttsfoundation.org
If you are newly diagnosed and request our TTTS book, the
registry will be in the book. If you have not, you can order
this free of charge at any time, even if years after your
pregnancy, and help research by filling it out.
The easiest and ideal way to record crucial
information on the registry is to fill it out during your
pregnancy. This will enable you to get the medical data that
you need in the quickest manner. You will need to contact
the medical records department in the hospital in which you
delivered and request in writing that you want the pathology
report on the placenta as well as ultrasound reports and birth
information on each of your babies after birth. We ask that
copies of this be attached to the registry. This is all explained
further on the cover page of the registry.
The medical community is not taking this
disease seriously enough to gather information. We are fighting
to make research a priority. We started our own research because
it was not being done. We concentrate on many factors including
diagnosis, treatment, delivery and placental information,
which is often never gathered. If you have any questions,
please do not hesitate to contact us.
Thank you very much for being a crucial
part in our research. This is a disease that is within our
reach to conquer. With your help, we will. |