1. Cancer Clinical Trials A Quality Cancer Care Option © 2014 ENACCT, Inc. All Rights Reserved

2. Key Tips About Cancer Clinical Trials Cancer clinical trials are an option in quality cancer treatment All patients should ask their doctor about cancer clinical trials Rights are protected of everyone who participates in research Everyone is affected by cancer © 2014 ENACCT, Inc. All Rights Reserved

3. Cancer in Underserved Communities  More likely to receive either:  No treatment, or  Treatment that does not meet current standards of care  Die from cancers that are preventable  Have died with cancers that could have been detected earlier © 2014 ENACCT, Inc. All Rights Reserved Shavers VL. J Natl Cancer Inst (2002); Tammemagi CM. Curr Opin Obstet Gynecol (2007); Edwards BK et al. J Natl Cancer Inst (2005); Clegg LX. Arch Intern Med (2002); Bach PB. N Engl J Med (2004); Jemal A et al. CA Cancer J Clin (2004); Gross C. Cancer (2008)

4. Cancer Clinical Trials…  Are research studies to find better ways to prevent, detect, or treat cancer  Help doctors find ways to improve cancer care  Are a quality cancer care option © 2014 ENACCT, Inc. All Rights Reserved

5. Why Should We Care About Cancer Clinical Trials? We all benefit from finding better ways to treat or prevent cancer Rhonda Baer, NCI, 2005 © 2014 ENACCT, Inc. All Rights Reserved

6. Who Benefits? The results of many trials help change the way cancer care is provided for everyone. BUT… – Less than 3% of all adults with cancer take part – Even fewer patients from racial and ethnic minority groups, who are over 65, or who are low income RESULT: Low participation=slower progress © 2014 ENACCT, Inc. All Rights Reserved

7. All Communities Should Take Part in Cancer Clinical Trials © 2014 ENACCT, Inc. All Rights Reserved

8. How Do Cancer Clinical Trials Work? © 2014 ENACCT, Inc. All Rights Reserved

9. People Participate in Many Types of Cancer Clinical Trials For people who have cancer  Treatment  Genetics  Quality-of-life/supportive care For people at high risk for getting cancer  Prevention  Genetics For people being screened for cancer © 2014 ENACCT, Inc. All Rights Reserved

10. Patients Can’t Choose Their Treatment in a Cancer Clinical Trial All have an equal chance to be assigned to groups:  One group gets the most widely accepted treatment  The other group gets the new treatment being tested, which doctors hope will be better Patients cannot choose their group, and neither can the doctors © 2014 ENACCT, Inc. All Rights Reserved

11. Patients Are Always Treated for Their Cancer  No one gets a placebo (sugar pill) instead of appropriate treatment  Placebos may be used in prevention trials © 2012 ENACCT, Inc. All Rights Reserved

12. We Have Protections Today Because of Abuses in the Past 20 th century abuses of human rights…. ◦In German concentration camps ◦In the Tuskegee Syphilis Study ◦With children and with the elderly ◦Among prisoners and the poor in Guatemala © 2014 ENACCT, Inc. All Rights Reserved

13. Protections Today: Informed Consent Process The purpose of the trial What will happen during the trial The risks and potential benefits Their individual rights Participants must be told about… © 2014 ENACCT, Inc. All Rights Reserved

14. What Patients Should Think About Before Deciding to Join a Trial © 2014 ENACCT, Inc. All Rights Reserved

15. There Are Benefits…  Patients are closely followed by doctors and nurses  If the new treatment being tested is proven to work, patients may be among the first to benefit © 2014 ENACCT, Inc. All Rights Reserved

16. And There Are Risks  New treatments are not always better than what is already used to treat cancer  Even if a new treatment has benefits, it may not work for everyone  May involve additional testing © 2014 ENACCT, Inc. All Rights Reserved NCI, 2005

17. Will There Be Extra Costs? Clinical trial participants must be told what the research costs will be and who will pay them during the consent process Clinical trials may have added costs –Research Costs –Patient Care Costs © 2014 ENACCT, Inc. All Rights Reserved

18. Key Facts About Cancer Clinical Trials Cancer clinical trials are an option in quality cancer treatment All patients should ask their doctor about cancer clinical trials Rights are protected of everyone who participates in research Everyone is affected by cancer © 2014 ENACCT, Inc. All Rights Reserved

19. Spreading the Word in Our Community Family Friends Co-Workers Church Members Neighbors Community Leaders © 2014 ENACCT, Inc. All Rights Reserved

20. There are Easy Ways to Find Available Trials in The Community Cancer Information Service 1-800-4-CANCER www.cancer.gov American Cancer Society 1-800-ACS-2345 www.cancer.org © 2014 ENACCT, Inc. All Rights Reserved

21. Thank you! © 2014 ENACCT, Inc. All Rights Reserved