There are several areas of research ongoing that may apply to familial dysautonomia. Some studies in genetics involve cells from individuals with FD, others are clinical trials which require the participation of human volunteers, and in the future, we hope to have studies using animal models. These studies are very important. Through the data gathered and examined in the course of these studies, doctors are better able to understand what goes wrong in a person with FD and therefore, how better to treat. It is essential that participation in these studies is supported by those with FD in order to reap the benefits of new and better treatment approaches.
Some studies require blood work, others involve evaluations such as tilt testing.
This center evaluates individuals with all forms of dysautonomia, including familial dysautonomia. Several clinically based cardiovascular studies are being conducted at the Center. Without such samples, researchers are unable to study familial dysautonomia. Donating to cell banks limits the number of times needed to give blood and helps facillitate research while maintaining confidentiality. Research projects are approved by a peer-reviewed board.