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:
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.