Your information WILL NOT be shared with the public. The information provided will be stored on a secure web portal. That means only certain doctor’s, researcher, and scientists will have access to the data as they are collected.
The main purpose of this registry is to collect, manage and analyze information about people with renal medullary carcinoma. Currently, there is no network that helps people get diagnosed and treated. Right here in the US, it takes multiple visits with multiple specialists for a patient with a rare disease to get diagnosed and some die before a diagnosis can be found.
The goal of the registry is to gather information that can be used to:
• Estimate the number of new cases of RMC each year.• Estimate the number of people who have RMC at a specific point in time.• Better understand who gets RMC and what factors affect the disease. • Examine the connection between RMC and those who carry the sickle cell trait. • Improve care for people with RMC.