Volunteers are needed
Currently, a new study has been started to investigate the effect of a new drug (ecopipam) on the self-injury of Lesch-Nyhan patients. Multiple hospitals around the world participate, and the study is currently open for enrollment.
You can find the press release here.
De Nederlandse aankondiging staat hier.
Lesch-Nyhan disease is a rare condition that affects children at a very young age. Children with this disease get kidney stones, they cannot control their muscles, and they develop an irresistible urge to try to hurt themselves. This site provides a resource for information about the disease. Sections include information on what is currently known about the disease, how it is diagnosed, what treatments are available, what's new in research, and where to go for help.
The content is written for everyone, at all levels of experience. Each section starts with general information that is written for patients, family members and caretakers. More detailed information, intended for physicians and researchers, can be accessed via submenus and links from the introductory section.
This website is currently under construction, and content will be continuously updated and added. If you have suggestions or comments, do not hesitate to contact the authors.