Resources

Every survivor of childhood cancer needs to be aware of the Childhood Cancer Survivor Study [CCSS] and the informational resources made available through their website.

If you haven’t already visited, myHeart, yourHands encourages you to do so.

CCSS is an extension of the Long Term Follow Up [LTFU] Study that began in 1994 [and] represents the ongoing collaborative effort of 25 original institutions and principal investigators.

CCSS participants are individuals who have survived at least 5 years following a diagnosis with a form of cancer during their childhood or adolescent years including all of the participants in the LTFU study with a confirmed diagnosis of cancer.

The CCSS follows a cohort of 20,346 survivors diagnosed between 1970 and 1986. The cohort was ascertained retrospectively [and] includes about 4,000 siblings of survivors who serve as the comparison group.

Of note, CCSS is currently seeking to increase the size of its cohort through the recruitment of individuals diagnosed and treated between 1986 and 1999 based upon the significant changes in treatment approaches over the last 3 decades.

Recruitment is being coordinated through the Department of Preventative Medicine at the USC School of Medicine in Los Angeles, CA to ensure compliance with HIPAA regulations related to recruitment. If you believe you may be eligible to participate, please contact CCSS directly through the contact us link on their homepage.

It is known that long-term survivors of childhood cancers carry treatment-specific risk for delayed or late effects of cancer therapy such as secondary cancers, end organ dysfunction [heart, lung, liver, kidney], reduced growth and development, infertility, and early death; therefore, CCSS set the goal of assembling a cohort of survivors large and diverse enough to provide investigators with the following opportunities:

  • to describe the experience of participants as related to the delayed or late effects of cancer therapy
  • to collect data describing health-related behaviors and utilization patterns of medical care
  • to develop strategies aimed towards prevention of late effects and the provision of medically appropriate follow-up healthcare

For more information specific to CCSS and a comprehensive list of publications, reviews, and abstracts resulting from CCSS research initiatives, please click here.

myHeart, yourHands would encourage the individual survivor to access the following areas of the CCSS website:

  • Participant Newsletters: Go to Documents, then Participant Newsletters
  • Data Tables: Go to Data [and] Analysis, then Public Access Data Tables