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## You are here

HomeHealth InformationNIH Clinical Research Trials and You

## NIH Clinical Research Trials and You

### NIH Clinical Research Trials and You

                - The Basics
                - Finding a Clinical Trial
                - List of Registries
                - Personal Stories
                - For Parents and Children
                - For Health Care Providers
                - For Researchers and Trial Sites
                - Educational Resources
                - Glossary of Common Terms
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                - In the News

# Personal Stories

### On this page

                    - Volunteer Stories
                    - Researcher Stories

## Volunteer Stories

## personal-story-adine-usher-square.jpg

#### Clinical Trials Help Build the Future of Medicine

Clinical trial outcomes can help inform our understanding of cancer and improve prevention, diagnosis, treatment, and care. But this progress could not happen without the people who choose to participate in and those who connect people with trials.

## personal-story-alyssa-thumbnail.jpg

#### **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.

## personal-story-annette-thumbnail.jpg

#### **Annette** (mother of a patient)

Annette’s daughter, Lauren, received treatment at NIH for Ewing’s sarcoma, a type of cancer. She shares how her experience at the NIH led her to begin painting hospital windows in the NIH Clinical Center.

## im-sad-that-its-ending.JPG

#### **Caitlin** (multiple sclerosis)

Caitlin tells about her experience living with multiple sclerosis and her decision to be a part of clinical trial for MS at the National Institutes of Health. The trial has just ended and Caitlin reflects on her fears of deteriorating quickly without treatment and her hopes that her participation will help lead to a treatment or cure one day for others with MS.

## personal-story-chuck-square.jpg

#### **Chuck** (metastatic prostate cancer)

Chuck Rose, creative director at NCI, shares his story about living with metastatic prostate cancer. In addition to emotional and physical effects stemming from their diagnosis and treatment, many survivors experience a new vulnerability as they look ahead.

## personal-story-david-thumbnail.jpg

#### **David** (retinitis pigmentosa)

To truly understand someone’s experience, put yourself in their shoes. No doubt, you have heard this adage and it is certainly the case for the many people who participate in clinical research. Many of us who work at NIH regularly say how invaluable clinical study participants are to improving public health, but have you tried on their shoes yet?

## personal-story-david-fogel.jpg

#### **David** (stomach cancer)

David Fogel thought he would never again be able to enjoy ice cream or chocolate cake after his stomach was removed in 2017. That didn’t matter to him, though, if it meant avoiding stomach cancer, a disease that he and several of his family members were likely to develop. Now, six years following the life-altering procedure, he can down an entire hamburger, with fries.

## Texas doctor with a strong family history of Alzheimer's becomes advocate for research

#### **Dewayne** (Mild cognitive impairment/Alzheimer’s disease)

Dewayne 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.

## personal-story-dhruv-thumbnail.jpg

#### **Dhruv** (Dock8 deficiency)

Dhruv always seemed to have skin infections, and he got sick easily. Doctors in his native India originally believed his skin infections were a type of allergy. But medication wasn’t helping. Bloodwork eventually showed Dhruv had been born with a compromised immune system.

## personal-story-emily-thumbnail.jpg

#### **Emily** (acute lymphoblastic leukemia [ALL])

Emily Whitehead had just celebrated her 5th birthday in 2010 when she was diagnosed with acute lymphoblastic leukemia (ALL). More than 90% of children diagnosed with ALL are cured, but Emily relapsed twice.

## personal-story-holden-square.jpg

#### **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.

## Women in Clinical Trials: Jamie’s Story

#### **Jamie** (cardiac defect called tetralogy of Fallot)

Jamie Gentille was born with a cardiac defect called tetralogy of Fallot, which required surgery when she was 3 years old. During that surgery, Jamie received a blood transfusion that was infected with HIV. Hear Jamie tell her story about participating in clinical research.

## Clinical Trials in Parkinson's Disease

#### **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.

## John and ALS: Participating in an NIH Clinical Study with Dr. Nath

#### **John** (amyotrophic lateral sclerosis (ALS))

NINDS Clinical Director Dr. Avindra Nath meets with clinical trial participant Mr. John Michael. Dr. Nath and his research team are conducting an NIH study to better understand amyotrophic lateral sclerosis or ALS. In the video, Mr. Michael shares his experience as a trial participant while Dr. Nath discusses his research.

## Women in Clinical Trials: Juliana’s Story

#### **Juliana** (sickle cell)

Juliana was born with sickle cell anemia, a condition in which the body’s red blood cells are sickle-shaped. It slows or blocks blood flow to parts of the body, causing intense pain called "crisis." Hear Juliana tell her story about how participating in a clinical trial saved her life.

## LaZann Allen / Giant Cell Arteritis

#### **LaZann** (vasculitis)

NIH patient, Liliana, shares her experience living with lupus and how participating in NIH clinical research has helped her.

## personal-story-leonard-thumbnail.jpg

#### **Len** (nephrosis)

Several years past his WWII military service at Pearl Harbor, following a routine visit to the doctor, Leonard Gardner once again faced imminent mortality—but he didn’t know it until many months later.

## Liliana Chavez / lupus (SLE)

#### **Liliana** (systemic lupus erythematosis (SLE))

NIH patient, Liliana, shares her experience living with lupus and how participating in NIH clinical research has helped her.

## personal-story-lisa-square.jpg

#### **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's Story

#### **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.

## personal-story-maddie-square.jpg

#### **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.

## personal-story-marilyn-thumbnail.jpg

#### **Marilyn** (participating in a colon cancer trial using telemedicine)

While COVID-19 surged in the United States in 2020, a colonoscopy revealed that Marilyn had stage III colon cancer. “I had no symptoms of colon cancer, so I was surprised to hear I had it,” Marilyn said. She’s glad she listened to her doctor and had the cancer screening test.

## personal-story-mel-square.jpg

#### **Mel** (chronic myeloid leukemia)

Mel was diagnosed with chronic myeloid leukemia and was running out of time when he enrolled in a clinical trial studying Gleevec, a targeted therapy developed by Dr. Brian Druker.

## personal-story-melanie-square.jpg

#### **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?

## personal-story-nicholas-square.jpg

#### **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.

## Nicole Jackson-Taylor / Lupus (SLE)

#### **Nicole** (systemic lupus erythematosus (SLE))

Nicole talks about her diagnosis of systemic lupus erythematosus (SLE) and subsequent treatment at the National Institutes of Health (NIH).

## i-know-there-is-strength-in-me.JPG

#### **Olivia** (stage-4 non-Hodgkin’s lymphoma)

Olivia was diagnosed with stage-4 non-Hodgkin’s lymphoma when she was just 15 years old. It was a rare diagnosis for a teenager, and she was treated in an adult ward. Now almost 50, she returned to the NIH, where Harrison, her husband of 25 years now works, to reflect on how facing her mortality at a young age has affected her life since.

## personal-story-sarah-rosenfeld.jpeg

#### **Sarah** (myxopapillary ependymoma)

In January 2016, Sarah Rosenfeld had such severe pain shooting down her legs she couldn’t walk, sleep or care for her young daughters. After weeks of physical therapy for what she thought was sciatica, she had an MRI. Thirty-seven-year-old Rosenfeld learned she had something far worse: myxopapillary ependymoma, a rare cancerous tumor in her spinal cord.

## Shirley Aviles / lupus (SLE)

#### **Shirley** (systemic lupus erythematosis (SLE))

Two years after Shirley’s mother passed away from systemic lupus erythematosis (SLE), Shirley was diagnosed with SLE. She shares her story of her diagnosis and subsequent treatment at the National Institutes of Health (NIH).

## personal-story-samantha-square.jpg

#### **Samantha** (metastatic breast cancer )

In a series of Twitter posts, NCI’s Center for Cancer Research (CCR) shares the story of Samantha Seinfeld, a metastatic breast cancer survivor who participated in a CCR first-in-human clinical trial over 10 years ago. Since then, she has remained cancer-free.

## personal-story-socrates-square.jpg

#### **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.

## Women in Clinical Trials: Sue’s Story

#### **Sue** (cervical cancer)

Sue Scott was diagnosed with stage 1B2 cervical cancer in 2011. She went through the standard course of prescribed treatment, which works for 65% of people with cervical cancer. Unfortunately, she was part of the 35% for whom it did not work. Hear Sue tell her story about how participating in a clinical trial saved her life.

## personal-story-julia.jpg

#### **Victoria and Julia** (Niemann-Pick Disease Type C)

Niemann-Pick disease type C, or NPC, is a rare childhood disease that gradually impairs brain function and movement. Researchers at the National Institutes of Health conduct NPC research, including clinical trials that test promising therapies.

## Volunteering For An Alzheimer's Disease Clinical Trial

#### **Warner** (Alzheimer’s disease)

Warner decided to volunteer for the Alzheimer's Disease Neuroimaging Initiative (ADNI) clinical trial for two reasons: his trust in the physician running the trial and a family history of the disease. He relates his personal experience participating in a trial, describing the various tests he takes and the benefits he perceives for his own health.

## personal-story-zenovia-square.jpg

#### **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.

## Researcher Stories

## researcher-story-advances-cancer-treatment-care.jpg

#### Advances in Cancer Treatment and Care

Dr. Deborah Mayer is an oncology nurse who shaped policies and services to improve survivorship care, and Dr. Arti Hurria is a world leader in geriatric oncology.

## personal-story-building-bodily-cancer-defences-square.jpg

#### Building Bodily Cancer Defenses

James Gulley provides new tools in the immune system’s fight against cancer.

## andrea-apolo-video-still.jpg

#### Andrea Apolo, M.D. — Spotlight on Scientists

Dr. Andrea Apolo, physician and cancer researcher, discusses her path to medical school and advice for aspiring doctors.

## Study Partners in Alzheimer's Disease Clinical Trials

#### How Study Partners are Vital to Alzheimer’s Research

Dr. Madhav Thambisetty of the National Institute on Aging at NIH discusses the role of study partners in Alzheimer's disease clinical trials. A study partner relates her experience in an Alzheimer's trial.

## Progress on the Inclusion of Women in Clinical Research

#### Progress on the Inclusion of Women in Clinical Research

Dr. Janine Clayton, Director of the NIH Office of Research on Women’s Health, discusses the changes made in the inclusion of women in clinical research in the last 25 years.

## janine-clayton-video-still.jpg

#### Why Should All Women Consider Participating in Clinical Trials?

The purpose of clinical research is to help understand how the human body works and how health and disease come about. Why is it important for all women to consider participating in clinical trials? The NIH Office of Research on Women’s Health (ORWH) answers this question by sharing personal experiences from clinical trial participants and insights from NIH leaders.

## Encouraging African Americans to Participate in Research Studies

#### Encouraging African Americans to Participate in Research Studies

Dr. Janel Johnson of the National Institute on Aging at NIH talks about the importance of African-American participation in medical research.

## Children and Clinical Studies: Messages for researchers

#### Children and Clinical Studies

In this video, more than a dozen pediatric clinician-researchers, doctors, and nurses talk about the importance of conducting clinical trials for children and what motivates them to do this critical work.

## Brian Wansink Spotlight

#### 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.

## Carl Lejuez Spotlight

#### 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.

## Charlene Quinn Spotlight

#### 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.

## Nina Jablonski Spotlight

#### 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

#### 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.

## Why Participate in Clinical Research?

#### 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.

## Clinical Research Nurses

#### Why I Do Clinical Research

Clinical research nurses tell about their pleasure in working with clinical trials.

## Becoming a Medical Researcher Is Not For Everyone

#### Why We Became Scientists

As featured on LabTV, NIH researchers talk about why they became scientists and what they hope to accomplish through their research.

This page last reviewed on February 29, 2024

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