Lighting the Way: A Practical Guide to Clinical Trials

The future of medicine has never been so bright. Advances in treatments are being announced every day that can help eliminate illness or improve the life of patients suffering from chronic, life threatening and/or debilitating diseases. New drugs and treatment options are in development in medical facilities and laboratories across the country that have the potential to improve the health of individuals, communities and populations. These new treatments need to be studied to make sure they are safe and as effective, or more effective, than current standard treatment options.

When a person is diagnosed with a life threatening or chronic debilitating illness there are options to consider for treatment. Those options include standard of care treatment or clinical trials. NCI defines standard of care as: "In medicine, treatment that experts agree is appropriate, accepted, and widely used. Health care providers are obligated to provide patients with the standard of care. Also called best practice and standard therapy." ¹ In this booklet we will discuss what clinical trials are, how to screen for a clinical trial, how to talk to your physician and family about them, insurance issues related to reimbursement, obstacles, adult vs. pediatric participation, and underrepresented populations participation in clinical trials.

Trials are another resource for ensuring access to care and/or emerging medications. There are nine chapters in Lighting the Way. There are note pages as well as a personalized Q&A (Question and Answer) section in the back of the booklet for your use. We hope after reading this booklet you will gain a better understanding of Clinical Trials and feel comfortable with making choices concerning them.

This guide is broken down into sections. Click on the links below to view each section. Enjoy your reading!

• Diagnosis Day
  Defines the term diagnosis and provides insight into where to begin upon learning you have been diagnosed with a life-threatening illness.
  


• Why Me?
  Addresses the mental preparation needed for you and your caregivers to cope
  with life altering changes and how to access the support systems available to you throughout this journey.
  


• What is a Clinical Trial?
  Talks about clinical trials and breaks down the complexities so the reader better understands them.
  


• Screening for potential participation
  Walks the reader through the screening process of clinical trials.
  


• How to talk to your physician and family
  Helps the reader understand the questions to ask your physician, and how to
  explain your choices to your family.
  


• Insurance Issues related to clinical trials
  Outlines the potential issues that may arise with health insurance coverage of
  clinical trials.
  


• Obstacles to clinical trials
  Helps identify things to consider, potential obstacles to your participation in a clinical trial.
  


• Pediatric vs. Adult participation
  Looks at the number of adults enrolled in clinical trials as compared to children and the reasons why.
  


• Underrepresented populations
  Identifies underrepresented populations and decreased enrollment in clinical trials.