People who hear my story often say, "You had an advantage getting into those clinical trials, because you were a doctor with connections." Given the paucity of patient-centered resources in 1993, this was true.
Today a plethora of excellent resources can help patients and families learn about clinical trials and find any available trials that might be right for you. Resources include:
- National disease-specific advocacy organizations (such as Komen for the Cure and Lymphoma Research Foundation) and their local branches, which might have data bases of open trials.
- http://www.clinicaltrials.gov/ A government-run website where, in addition to a primer on clinical trials, you'll find a registry of federally and privately supported clinical trials conducted in the United States and around the world.
- http://www.ciscrp.org/ The Center for Information and Study on Clinical Research Participation (CISCRP), a nonprofit organization dedicated to educating and informing the public, patients, medical/research communities, the media, and policy makers about clinical research and the role each party plays in the process.
- http://tinyurl.com/ACS-Match A free, confidential program that helps you, your family and your healthcare team find available trials suited to your situation.
As a Healthy Survivor, include clinical trials in your list of treatment options. Clinical trials are not for everyone, so work together with your physicians to decide if a clinical trial is the best option for you.