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Sarcoma Registry


#1

There is a new sarcoma registry from University of Iowa Carver College of Medicine which is recording patient's quality of life:

http://www.medicine.uiowa.edu/sarcomaregistry/innovation/

I joined the registry. They sent me a questionnaire with a lot of specific questions about my physical abilities and my mental status. It was quick and easy to fill up. I am assuming they will use the registry to compare the impact of different treatments on quality of life.


#2

So I checked it out, but can't register because they are not accepting people with SS in the thoracic cavity, which includes lungs. Doesn't seem right, but whatever.


#3

I can't register either, same reason - synovial sarcoma in thoracic cavity. Maybe someone else will have a registry for us.


#4

This registry was set up by an orthopedic surgeon. He is most likely looking to improve his specialty. That's probably why thoracic patients are not interesting for him :-(

The Sarcoma Foundation of America also has a registry which is not filtering patients:

http://www.curesarcoma.org/patient-registry/