Organizations and Links
There are three WAS registries that are actively recruiting patients in order to build a database that will provide valuable information to physicians and researchers who can study the data and provide improved care to the patients.
Why is participation important?
- Maintaining the relationship between researchers, physicians and patients is vital to progress in improving care for WAS patients.
- Valuable data regarding patients with WAS is collected and analyzed.
- Patients and carriers maybe able to participate in a study that will collect information on children with WAS who have and those who have not had a transplant.
- The results will help us to better understand the disease and help optimize treatment approaches for this disorder.
The links below gives detailed information on the purpose of the registry and how to register.
If you have information about registries in other countries, please send an e mail to email@example.com. Thank you.