Partner with the Cancer Support Community to recruit participants for the Cancer Experience Registry

What is the Cancer Support Community?

The Cancer Support Community (CSC) is the largest professionally led nonprofit network of cancer support worldwide. Through its direct service, research, and policy institutes, CSC is dedicated to ensuring that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community. Its network of over 190locations includes CSC and Gilda’s Club centers, hospital and clinic partnerships, and satellite locations that deliver more than $50 million in free support and services to patients and families.

What is the Cancer Experience Registry?

The Cancer Experience Registry (CER) is CSC’s nationwide online research survey for cancer patients, survivors, and caregivers that uncovers the broad impact of cancer. The survey focuses on multiple aspects of cancer to understand its emotional, physical, practical, and financial impact, so we can identify and address gaps in care and influence outcomes such as survival, quality of life, and healthcare cost. The CER collects data across a variety of areas, including:

How can state cancer coalitions get involved?

State coalitions can partner with CSC to recruit new participants into the CER. CSC has developed a toolkit with information flyers and social media postings making it easy to promote the CER and invite others in your network to get the word out. CSC can help state coalitions get in touch with their local CSC or Gilda’s Club for additional collaboration and recruitment support.

What do state cancer coalitions get in return?

Any state coalition that recruits 100 new cancer patients, survivors, or caregivers into the CER can receive a curated patient, survivor, or caregiver data report for their state. Reports can include data on participant sociodemographic characteristics, treatment experiences, health behaviors, quality of life, and more. See an example page from one of our recent reports below:

How can CER data benefit state cancer coalitions?

By harnessing the power of patient and caregiver voices in your state, the CER helps translate the lived experience of cancer into actionable information to inform state cancer plans and decision making. State-specific data from the CER can provide unique insights on cancer patient, survivor, and caregiver needs in your state that can be used to support the development of tailored, state-specific educational resources and inform state healthcare policies and programs that address patient, survivor, and caregiver needs.

How can my state get involved?

For more information on how you can partner with Cancer Support Community on this initiative and receive your own state-specific patient or caregiver insights report, contact Kara Doughtie, Research Operations Manager at CSC: [email protected].