Fabry Disease is a rare genetic disorder where the body lacks an enzyme called αGAL (alpha-galactosidase). This enzyme helps break down certain fats, and without it, these fats build up, causing various health problems. The Fabry Disease Registry is an ongoing program that collects information from patients with Fabry disease to better understand the condition, even if they are not receiving treatment. This registry helps doctors improve patient care by learning about how the disease progresses and how treatments work over time.
The Fabry Pregnancy Sub-registry focuses on tracking pregnancy outcomes in women with Fabry disease, whether they are receiving treatment or not. Both registries are observational, meaning they do not involve any experimental treatments. Instead, patients receive normal care as decided by their doctor.
- Study is observational, with no experimental treatments.
- Participants include anyone diagnosed with Fabry disease.
- Data is collected to improve understanding and care of Fabry disease.
To participate, patients must provide consent and have a confirmed diagnosis of Fabry disease. Pregnant women or those who have been pregnant can join the pregnancy sub-registry. There are no exclusion criteria for participation.