Apr. 20, 2017

Lupus Registry Launched

The Lupus Foundation of America is excited to announce the launch of the Research.forME™ Lupus Registry

The Research.forME Lupus Registry is for all people with lupus and is important because the knowledge gained from it will help to inform the development of future clinical research and treatment development, as well as provide valuable information about the impact of the disease on the individual and their loved ones who are impacted by lupus.

Enrolling in the Registry consists of a 45-minute survey on quality of life, diagnosis, treatment and care. All of the information is stored in a secure database and protected through the LFA's privacy policy, which can be found here lupus.org/pages/privacy-policy. When findings are reported, only summary findings will be available with no contact or other identifiable information available. Individuals who register will be provided with information about relevant research studies and opportunities that might interest them based on their registry responses. People with lupus, or their legal guardians, and the legal guardian of children with lupus are eligible to enroll in the Registry.

The Registry is a valuable resource and we hope this improves the lives of people with lupus and brings us closer to demystifying this disease.

Please visit the go to the information pages on the Registry website or contact the Registry coordinator at .(JavaScript must be enabled to view this email address) with any questions.