Personal Stories: Hope from NIDDK Clinical Research
People participate in clinical research for many reasons: to help others, to have the opportunity to try a new treatment or prevention strategy, to have the additional care provided by research staff, and to advance scientific progress. Many people also raise awareness of the value of clinical research and promote it in other ways. Clinical research is improving people’s lives today and offers hope for the future. Learn more about clinical trial basics, the importance of participating in clinical trials, and how to find a clinical trial.
View personal stories below, organized by condition:
Reflecting upon her experience in the TODAY trial, Kathrine expresses extreme gratitude: “TODAY didn’t complete me. It complemented me. It gave me the tools to be a better me.”
Regarding participating in the TEDDY clinical study, Jenae’s advice to others is not to be afraid to take on things like this. "The work is worth it…. It’s empowering.”
Talking about her experiences in the Diabetes Prevention Program clinical trial, Pamela says: “This is one of the best things to ever happen to me, to have had this opportunity to be part of this program.”
While using an artificial pancreas system in a clinical trial, Elena says, “I definitely feel like my mental health improved…. I’m not having to babysit my blood sugar 24/7.”
Claire, a volunteer in the Type 1 Diabetes TrialNet network, encourages others to participate in clinical research. “Even if it doesn’t end up benefitting them, it’ll benefit others, and will definitely contribute to science.”
When hearing about the possible total pancreatectomy-islet cell autotransplantation (TP-IAT) surgery for pancreatitis, Valentina didn’t have any reservations: “I immediately felt that this was something that I had to do ....”
Ben, a participant in the PROTECT study of ulcerative colitis treatment, recommends that others participate in research studies if they have the opportunity. "I feel that by participating, you are helping with research that could really benefit others in the future," he says.
“The exciting part was that the research is being done on the molecular level. So maybe they will be able to look into the mechanism that is behind what my problem is,” says Harriet of her participation in the NIDDK’s Kidney Precision Medicine Project, which facilitated her diagnosis of a rare kidney disease.
“One of the hopes that we have is that soon, hopefully, there is a medicine that can reverse or stop the cirrhosis of the liver,” says Marco, describing how studies such as those conducted by the Childhood Liver Disease Research Network (ChiLDReN) may be able to help his daughter Emilia.
“It was an opportunity to have really good care and to be monitored on a regular basis,” Jeff says about joining the Drug-Induced Liver Injury Network study. “I think that was the biggest thing, that they would be watching over me, trying to understand this better, and trying to help in the future.”
Brittney, a study coordinator working with kids and parents in the Prevention of Urinary Stones with Hydration (PUSH) clinical trial, says she constantly sought out ways “to prevent having any barriers or burdens … on the parents as much as possible.” Another PUSH study coordinator, Holly, says “Being a prevention study, we want it to be a positive experience for them.”
The Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium's goal is to establish the scientific basis for future studies that can promote bladder health. A foundational activity of PLUS was the 2017 Study of Habits, Attitudes, Realities and Experiences, or SHARE. Five participants discussed their experiences in their respective SHARE focus groups for this feature.
"Participating in the studies, I think it helps the doctors figure out more about the disease and, you know, come out with more medicine and just help out everybody who has it," says Nicholas.
This content is provided as a service of the National Institute of Diabetes and Digestive and Kidney Diseases
(NIDDK), part of the National Institutes of Health. The NIDDK translates and disseminates research findings to increase knowledge and understanding about health and disease among patients, health professionals, and the public. Content produced by the NIDDK is carefully reviewed by NIDDK scientists and other experts.