Personal Stories

Alyssa (McCune-Albright syndrome)
As a participant in a longitudinal study about her rare condition, Alyssa has been coming to the NIH every year since she was in elementary school. Researchers have given her and her family updates and guidance about her growth and have gained valuable data about the way the syndrome is expressed as a person ages.

Dewayne (Mild cognitive impairment/Alzheimer's disease)
Dr. Dewayne Nash has a strong family history of Alzheimer's disease and he's always known that it could be in his future. So, he decided to volunteer for a study at UT Southwestern's Alzheimer's Disease Center where he could contribute to research efforts and be monitored for signs of cognitive impairment. His decision to volunteer changed his life and set him on a new course.

Holden (Crohn’s disease)
On the surface, Holden looks like the typical ten-year-old boy — soccer jersey, blonde hair and blue eyes, even freckles. But spend some time with him and you will realize that he is dealing with a chronic illness, Crohn’s disease, that makes his life anything but ordinary.

Jean (Parkinson’s disease)
Before me, there were hundreds and thousands of other people with Parkinson's who participated in clinical trials that gave me the ability to have the medications that I take today. If people today do not participate in clinical trials, there will be no cure. There will be no new medications.

Jenny (type 1 diabetes)
I participated in an NIH-funded clinical trial in high school because my mom has type 1 diabetes. Although I decided to participate to help the scientists learn more about my mom's condition, it ended up having a big benefit for me as well.

Lisa (hormonal changes at midlife—healthy volunteer)
Participating in this clinical trial gave me some insights into how quality clinical research is done. Both the doctor and nurses answered any questions I had about the overall study and what they were finding, making me feel part of a larger effort to help women who experience severe difficulties with this phase of life.

Lydia (hypoparathyroidism)
As a side effect of a past surgery, Lydia developed hypoparathyroidism, a disorder that inhibits her body’s ability to manufacture enough of a particular hormone. Through a clinical study, Lydia works with researchers to manage the condition’s effects on her bones, and scientists gain useful information about the effects of using a synthetic replacement version of the hormone she lacks.

Maddie (hives when exposed to cold—healthy volunteer)
I actually work in research as well, and I know how important it is to get healthy volunteers, so I thought it would be nice to kind of give back.

Melanie (no disease identified—healthy volunteer)
I had a sister who died of cancer, so I believe it is very important for healthy people to help. We have a role to play in helping find new, more effective treatments that can save lives. What could be better than that?

Nicholas (sickle cell disease)
Nicholas was diagnosed with sickle cell disease soon after he was born. He suffered from hand-feet syndrome as a baby ("He cried and scooted around a lot because of pain in his hands and feet," recalls his mother, Bridget) and had his gallbladder and spleen taken out at age 5.

Pamela (multiple myeloma)
The clinical trial helps so much because one of the drugs I'm using now I used in the clinical trial, so if it helps other people, and everybody there on the days I go has the same disease usually, then I'm happy fo that.

Socrates (HIV/AIDS vaccine research)
I was born and raised in Culiacan, Mexico, the third of four siblings. I grew up in a very matriarchal family. I contracted hepatitis A when I was 7 years old, and though I made it through, I considered it a curse. I could not donate blood, and that always made me unhappy.

Zenovia (HIV study—healthy volunteer)
I had never knowingly encountered anyone who was HIV positive until I was a sophomore in high school. It was then that I learned that my uncle had contracted the virus and his health was rapidly failing. I was really surprised that my family never talked about his HIV or how he may have contracted the virus.

Eating Habits
Brian Wansink, Professor at Cornell University, discusses how a lot of eating habits can be changed by changing the environment in which people encounter food.

Addictive Behaviors
Carl Lejuez, Professor of Clinical Psychology at the University of Maryland, College Park, and Director of the Center for Addictions, Personality & Emotional Research, discusses translational research — studying the basic internal processes that lead people to addictive behaviors.

Diabetes
Charlene Quinn, Associate Professor, University of Maryland School of Medicine, discusses new mobile technologies and behavioral changes that could reduce the number of diabetes cases related to lifestyle and eating habits.

Skin
Distinguished Professor of Anthropology, Penn State University, discusses how human lifestyle decisions impact the health of our skin and our skin's ability to mediate our health overall.

National Database for Autism Research (NDAR)
The National Database for Autism Research provides a way for scientists share data on human autism studies. Families with autism can accelerate discoveries by participating in research and consenting to have their data shared.

Clinical Trials for Rare Blood Diseases
Dr. Neal Young talks about the importance of conducting and participating in clinical trials and the difference these studies have made in the lives of people with severe blood and bone marrow diseases such as aplastic anemia.

Retinopathy of Prematurity
Clinical research has shown that through an eye exam, doctors can identify infants who are most likely to benefit from early treatment for a potentially blinding eye condition called retinopathy of prematurity (ROP), resulting in better vision for many children.

Why Participate in Clinical Research?
NIH-supported ResearchMatch.org helps volunteers and researchers connect for clinical trials. Researchers and clinical trial participants explain what it's like to volunteer for a trial and how it promotes medical advances.

Stuttering
In a 2010 movie, The King’s Speech, many learned for the first time about King George VI of England’s speech challenge known as stuttering and about the King’s work with a speech therapist to overcome this communication disorder heard in speeches such as this one he delivered in Wembley Stadium.

Why I Do Clinical Research
Clinical research nurses tell about their pleasure in working with clinical trials.