International Collaborative Gaucher Group (ICGG) Gaucher Disease Registry & Pregnancy Sub-registry

Imagine a big, ongoing health diary for people with Gaucher disease from around the world. That's essentially what the International Collaborative Gaucher Group (ICGG) Gaucher Disease Registry is. It's not a study where you try new medicines; instead, doctors simply record information about your health and the care you're already receiving as part of your regular check-ups. The main idea is to gather a lot of information over time to help doctors and researchers understand Gaucher disease better. This includes seeing how the condition can differ from person to person, how it progresses, and how current treatments are working in the long run.

The information collected helps medical experts create better recommendations for monitoring patients and provide reports that can improve overall patient care. Think of it as a shared learning experience for the global medical community. It also helps to understand the full range of people living with Gaucher disease and to evaluate how well certain long-term medications, like imiglucerase and eliglustat, are truly working over many years.

There's also a special part of this registry called the Gaucher Pregnancy Sub-registry. This is specifically for women with Gaucher disease who are pregnant or have been pregnant. The goal here is to carefully track how pregnancies progress, any complications that might arise, and how the babies grow and develop after they're born. Again, no experimental treatments are given; doctors just record the standard care and outcomes. This helps gather crucial information to better support women with Gaucher disease during pregnancy and ensure the best possible start for their babies.