Research Participant: A Story of Thanks and Giving
Brittany Robinson (pictured with her son William Robinson) is participating in a clinical trial to find a treatment or cure for cytomegalovirus (CMV) in ACTSI's Clinical Research Network at Emory University Hospital
Why I chose to participate in an eight-day, in-patient research study…
Brittany Robinson, from Suwanee, GA, spent eight days and nights at Emory University Hospital and was not sick. She spent over a week away from her five children as a way to give back and say thank you to the hospital that helped her son, Ethan. Robinson participated in an in-patient research study (A Phase I Trial to Evaluate the Safety and Pharmacokinetics of Multiple Ascending Doses of MBX-400 in Healthy Volunteers), or clinical trial, testing the oral medication MBX-400 to treat cytomegalovirus (CMV) infection.
CMV is a common virus that can infect the majority of the population but can cause severe eye, neurologic, and organ diseases in patients with a weakened immune system. The oral and IV medications currently used to treat CMV have limitations and many scientists are stepping up to help find a new treatment. The study enrollment criteria mandates only healthy people can enroll.
But after eight days in the Atlanta Clinical & Translational Science Institute’s Clinical Research Network at Emory University Hospital, Robinson says she feels better than ever and is more in-touch with her overall health. “The experience has been wonderful. I was actually very nervous going into it. I’ve never been away from my family for this long before. But I feel better, because you have to do a fast, can have no alcohol or caffeine, and I’ve actually gotten sleep. I feel refreshed, like a paid vacation,” said Robinson. The in-patient trial provides all meals, a room with a view, and the quiet needed for adequate rest. Something Robinson says she has not had since her first son was born eight years ago.
Ethan was diagnosed with the heart defect Wolff-Parkinson-White (WPW) syndrome with Ebstein’s anomaly at birth, and was treated at Emory-Children’s Center and the Egleston cardiac ICU. About a year ago, Ethan had an ablation to cure the WPW. “My son was on medication from nine months old until last year. If there wasn’t someone doing this for him, for his heart medication, who knows what would have happened,” said Robinson. The medicine prescribed to her son went through the same process MBX-400 must go through now.
A Day in the Life of an In-patient Research Participant
It all began with a letter in the mail. “I was going to throw it out, for some reason I kept being drawn to it, and thinking this is my way to give back,” said Robinson. She completed the initial screening visit at Emory University’s Hope Clinic and was eligible for the study. “We are not rich, but I wanted to find a way to give back, and I knew I could do this.”
So she temporarily moved into the in-patient unit of the Clinical Research Network at Emory University Hospital and for eight days woke up, ate by a certain time, took a pill, fasted for two hours, gave blood, urine, and stool samples, had a few EKGs, and the rest was free time. “And we can have visitors with no restricted hours. My family came twice because of school schedules, but it was a very pleasant experience and the food here isn’t bad,” said Robinson.
Robinson’s husband had to take a week off from work to care for their children so she could volunteer. The last day of her stay her youngest son, William, spent the day in the Clinical Research Network so his father could leave for a business trip. The stroller and pack-n-play fit nicely in Robinson’s room along with the football-themed comforter from Ethan’s bed at home.
Ethan’s birthday was while his mother was volunteering and the team of doctors and nurses hosted a birthday party for him. The party was made complete with a magician, another study participant, and cake (meeting the nutritional guidelines for the study). “That meant the world to me. So I did not have to miss his birthday, they went above and beyond,” said Robinson.
Research Participants are Heroes
Allison Beck, PA, Mari Hart, RN, Nadine Rouphael, MD, and a team of Research Coordinators with the Hope Clinic have been recruiting for months to fully enroll this trial. Their struggle is common for clinical trial recruitment. People are hesitant because they do not want to be a “guinea pig” or are too busy to interrupt their normal routine though most studies provide compensation for time and travel. People like Robinson who have had to rely on the medical field to save their loved ones do not usually make the incredible connection she made. This study is still enrolling and only has half the participants needed to complete the trial.
“Without research, we do not have the treatments and cures that save our loved ones. New medicines and vaccines that work and are safe are only discovered when heroes like Robinson and her family are willing to give their time to research and enroll in a study,” said study PI Mark Mulligan, MD, distinguished professor, Department of Medicine and executive director, Hope Clinic of the Emory Vaccine Center, Emory University. Robinson may never know anyone with CMV but she is helping to give better treatments to those who are ill. Every medication, treatment, or medical device currently available was FDA mandated to go through this process to prove safety and efficacy. This pipeline of new treatments and cures stops if trials cannot find participants. Clinical trials close and treatments and cures never make it to those who are ill.
“This was my first research experience and after this experience I would definitely participate again. My husband is interested in doing the next round of studies, so we can switch off, and he can be the one to give back. There is nothing to be scared of,” said Robinson.
The Emory Hope Clinic needs more volunteer participants for this study and others. More information is available at www.hopeclinic.emory.edu and by calling 404-712-1371. The study is conducted by Emory’s Vaccine and Treatment Evaluation Unit (VTEU) funded by the U.S. National Institutes of Health (NIH).
ACTSI’s Clinical Research Network inpatient and outpatient units provide valuable research implementation services for clinical investigators, including laboratory and nursing services. ACTSI is a city-wide partnership between Emory, Morehouse School of Medicine, and Georgia Tech and is one of a national consortium striving to improve the way biomedical research is conducted across the country. The consortium, funded through the National Center for Advancing Translational Sciences one of the National Institutes of Health’s Clinical and Translational Science Awards (CTSA), shares a common vision to translate laboratory discoveries into treatments for patients, engage communities in clinical research efforts, and train the next generation of clinical investigators.
Groundbreaking scientific advances have been made at Emory because of volunteer participation in clinical trials and research. Emory Healthcare is proud to sponsor over 1,000 clinical trials. As the leading academic medical center in the state of Georgia, our involvement in clinical trials sets us apart from other healthcare organizations, as we provide patients with cutting-edge care that is often not available elsewhere. To learn more, visit Clinical Trials at Emory. As an organization which aims to expedite the translation of healthcare discoveries to patients, Emory Healthcare is pleased to offer clinicaltrials.emory.edu – a website describing the clinical trials at Emory which are accepting volunteers locally. Emory Healthcare also supports ResearchMatch.org – a product of the CTSA Consortium that brings together researchers and people who are willing to learn more about research studies nationwide.
In 2013, Henry Young, PhD joined the University of Georgia (UGA) as the Kroger Associate Professor in Community Pharmacy. For the Georgia Clinical & Translational Science Alliance (Georgia CTSA) he is a co-director of the Integrating Special...