Project GENESIS

Project GENESIS

What is Project GenESis?

Ewing sarcoma is the second most common bone cancer in children and young adults, but we know very little about why people get it. Project GenESis is one of the first studies to try to find out.

Project GenESis: The Genetics of Ewing Sarcoma International Study investigates inherited factors that may lead to Ewing sarcoma. It also aims to determine how these factors affect cancer risk, outcomes, and prevention.

Who can participate?

Children and adults who have been diagnosed with Ewing sarcoma and their biological parents and/or sibling(s) are invited to participate.

How can I participate?

You can participate in the study through the mail. We will ask you to do the following:

  • Donate a sample of saliva using a spit container and/or cheek cells using a swab
  • Fill out surveys about your medical and family history
  • Give us permission to contact your biological parents and/or full siblings who may be eligible to join the study
  • Provide other information and samples we may need

Participating in Project GenESis is voluntary. You may stop at any time. If you choose to withdraw, your decision will not affect your current or future relationships with your physician, the Children’s Oncology Group, or the University of Utah.

Will I be paid for my time?

You will receive a $25 gift card (up to $75 per family) to show our appreciation for your participation.

If you or a family member has been diagnosed with Ewing Sarcoma and you are interested in participating, please fill out our information request form.

Contact Us

For more information about Project GenESis, please feel free to contact us.

Toll-Free: 1-855-441-0396

Email: projectgenesis@hci.utah.edu


The information posted on this site is consistent with the research reviewed and approved by the University of Utah Institutional Review Board (IRB). However, the IRB has not reviewed all material posted on this site. Contact the IRB if you have questions regarding your rights as a research participant. Also contact the IRB if you have questions, complaints, or concerns which you do not feel you can discuss with the investigator. The University of Utah IRB may be reached by phone at (801) 581-3655 or by email at irb@hsc.utah.edu.