For Patients
Clear Cell Sarcoma Foundation (formerly Sara's Cure) is an organization dedicated to providing a place for CCS patients and caregivers to come together for sharing and support, while taking an integral step toward better treatments and outcomes. We are a family who cares about the well being of each other. You are not alone.
Newly Diagnosed?
If you've recently been diagnosed with Clear Cell Sarcoma, you may be feeling lost, overwhelmed, and uncertain about where to begin. While Clear Cell Sarcoma is an ultra-rare cancer, a quick online search can yield an overwhelming amount of information. Keep in mind that not everything you read is accurate. We’ve compiled a set of trusted resources and support options from reliable sources to help guide you through this journey.
Remember, you are not alone.
Note: Clear Cell Sarcoma is a different cancer than Clear Cell Sarcoma of the Kidney.
Do Your Research
Now that you have this new diagnosis, you are likely to begin researching on your own. What you will find are difficult-to-read publications filled with words that you have never needed to know before. We have included some of those words with definitions below for you. This is certainly not a comprehensive list, but this will get you started. Please remember that it takes time to absorb all of this new information, but you will get it. Don’t hesitate to contact us or others for support. It is good to have a loved one prepared to advocate with you. You are not alone.
The National Comprehensive Cancer Network® (NCCN®) provides patient and physician guidelines for several cancers. Clear Cell Sarcoma (CCS) is a type of soft tissue sarcoma (STS). The NCCN® Soft Tissue Sarcoma Guidelines contain general information for sarcoma patients. The only CCS specific info is that CCS generally doesn't respond to current chemotherapy.
Since CCS typically is diagnosed in adolescents and young adults (AYA), a link to the NCCN Guidelines to AYA is provided.
Donate Your Tissue
We have partnered with Pattern.org who is available to assist you in donating at NO cost to you.
It is very difficult to obtain fresh surgical tissue with such a rare disease and so few patients, but you can change that. Pattern.org needs fresh Clear Cell Sarcoma tissue to create a sustainable resource. It is easy and only takes a few minutes of your time to fill in an online consent form at Pattern.org and they will handle all the arrangements, working with your surgical institution.
Due to several regulatory issues involved with transporting living tissue across the border, Pattern.org can only accept tissue from the contiguous U.S. currently.
If you don’t have a surgery date yet you can still sign up on Pattern.org and leave the date blank.
If you have any questions, please reach out to the CCS Foundation or Pattern.org
Tissue is one of the critical issues in any rare disease.
What would be even better, is anyone who can connect with the Clear Cell Sarcoma Foundation (Saras Cure) and be able to make sure their tissue is processed appropriately from the beginning. It's invaluable"
- Dr. Kevin B. Jones, MD
It's critical to donate your tissue so research can be done in hopes of finding a treatment for CCS.
Excess tissue must be donated during surgical removal of the tumor.
Tissue isn't usually usable if sent to a lab 1st, since the tissue is placed in paraffin (wax) or formalin.
Looking for a Clinical Trial?
A clinical trial is testing the safety and effectiveness of a new medical treatment or intervention.
When looking for a clinical trial, understand that many trials that will permit Clear Cell Sarcoma patients are really testing a drug or treatment for a different type of cancer.
Focus on trials testing drugs or treatments specifically for
Clear Cell Sarcoma patients.
Patient Registry
xCures Observational Study - Accelerate Clear Cell Sarcoma Research
The Clear Cell Sarcoma Foundation has partnered with xCures, a pioneer in healthcare data management, to gather medical information from Clear Cell Sarcoma patients into structured, regulatory-grade clinical data. The xCures platform is a powerful tool for collecting and organizing medical data to study the natural history of Clear Cell Sarcoma.
In an observational study, xCures gathers medical records of people with Clear Cell Sarcoma and organizes that information to generate real-world data (RWD) and real-world evidence (RWE) that can be used by scientists and expert clinician scientists.
Clear Cell Sarcoma
Specialist Database
Finding experienced sarcoma specialists can be a challenge due to the exceptionally rare nature of Clear Cell Sarcoma. To support the CCS community, CCSF has created this community-driven comprehensive database.
We deeply appreciate contributions from our community members. However, we encourage you to conduct thorough research and ask important questions before choosing a specialist. CCSF does not endorse or verify the accuracy of these submissions.
Have a CCS specialist you'd like to add? Use the button below to share their information.
This database is best viewed on a computer.
