A registry is a way for doctors to learn about patient experiences during and after treatment for a disease such as cancer. People who join a registry agree to participate and be followed for an extended period of time -- months, years, or decades.
A new breast cancer registry, called The Breast Cancer MAP (Mind Affects the Physical) Project has been created. This registry hopes to enroll 1,000 breast cancer survivors to better understand their emotional and social needs over time. Women participating in the MAP project will participate in a number of activities:
- weekly live discussion sessions
- web discussion forums
- one-on-one personal contacts
- video and written blogs
- instant messaging
The Cancer Support Community -- also known as The Wellness Community -- is leading the MAP Project. This organization offers comprehensive support to people affected by all types of cancer. Many of their programs are community-based and focus on addressing the emotional needs of cancer patients. The Cancer Support Community started the MAP Project after other research by the Community showed that 80% of breast cancer survivors said they had experienced emotional distress and more than half said people around them misunderstood their emotional distress. Other research found similar problems and also found that effective emotional support during and after breast cancer treatment not only improves emotional health but also survival rates.
You can learn more about the MAP Project registry online.