At the heart of all medical treatment, advancement, and the development of cures for devastating diseases is research. Before a new drug can be put on pharmacy shelves, it must first undergo the clinical research process.
Every year, thousands of individuals make the decision to become a part of this research process by participating in a study. If you have never considered or participated in a clinical trial, you may wonder why someone would choose to participate.
There are many reasons why someone may choose clinical research to meet their healthcare needs. Here are five important ones:
• They are a parent or caregiver to a loved one who would benefit.
For Jenn McNary, a mother of two children with Duchenne Muscular Dystrophy, a genetic degenerative disorder, enrolling her boys in clinical trials was a decision she made as a mother to ensure a better quality of life for her sons. “I decided Austin and Max were going to be in any clinical trial they were eligible for when they were five and two years old. It was never a question in my mind because I was told my sons would not live into adulthood. There were no care options,” Jenn shares.
• Clinical studies can offer access to new treatments unavailable through standard care options.
This was the case for Marc Yale, who lives with a skin condition called Mucous Membrane Pemphigoid. When Marc was diagnosed in 2007, there were very few treatment options for his condition, and he had become resistant to the medication he had been prescribed. “A specialist in Boston recommended I join a trial happening for a new off-label drug. I was finally able to treat my condition and finally went into remission,” Marc says.
• Clinical studies provide a higher level of medical monitoring and an attentive care team.
Desiree DeLuca-Johnson, a breast cancer clinical trial participant, struggled with constant anxiety before joining a clinical trial. She reflects, “Every single day, my first thought was, ‘how will I know if my cancer has returned?’ Now I wake up and feel free. I felt safer in a clinical trial because I had a better relationship with my research oncologist and oncology nurse in Boston, and they constantly monitored my cancer.”
• Participating in a clinical study provides valuable information that can help patient communities and advance treatments.
Trishna Bharadia, a clinical trial participant with Multiple Sclerosis, wanted not only to improve her health, but to further researchers’ understanding of MS to help others in her community. “If I can help in some way, then I will. I want to provide a better future for those of us who are living with these conditions and for the people who are yet to be diagnosed,” she shares.
• Clinical studies can provide life-saving medical treatment and a better quality of life for patients with rare or advanced stage conditions.
This is the case for Melvin Mann, a clinical trial participant who is now the world’s longest living Chronic Myelogenous Leukemia survivor. When the treatment Melvin was initially prescribed stopped working, he took a chance on a clinical trial in the hopes that it would save his life. “Taking Imatinib was a game changer for me. Just nine months after starting the trial, I was healthy enough to run a marathon,” Melvin recalls.
Participating in clinical research may not be the right choice for everyone, but it is lifesaving for many. The Center for Information and Study on Clinical Research Participation offers educational services and resources that increase awareness and understanding of the clinical research process, including a Medical Hero library of articles sharing experiences and insights from clinical trial participants like Jenn, Marc, Desiree, Trishna, and Melvin.
To learn more about clinical research and decide if participating is right for you, visit CISCRP’s website at www.ciscrp.org.