Clear Cell Sarcoma Foundation

Patient Registry

A Patient Registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure and that serves predetermined scientific, clinical, or policy purpose(s). Our registry is currently in final review stages and getting ready for launch.

What is a Registry?

Support Our Registry

For Patients

We are a family who cares about the well being of each other. You are not alone.

Clinical Trials

Clinical Trials are the primary way that researchers find out if a new treatment is safe and effective in people.

Donate Your Tissue

The single most valuable thing we can do as patients is donate our tissue to research.

Newly Diagnosed?

It’s important when you’ve been diagnosed with something rare to get a second opinion, sometimes a third

Patient Registry

We have officially initiated our patient registry in January, 2020 through the National Organization for Rare Disorders.

Warrior Stories

All of us have a story. Read the stories of our Clear Cell Sarcoma warriors and share your own with the world.

Definitions You Should Know

it's important that we understand these definitions so that we can make the best decisions for ourselves and our family

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