Summer 2010

 

The best reasons to volunteer are all around you.

Some you love.
Some you miss.
Some you’ll never know.

The NIH Clinical Center:
America’s clinical research hospital

At the NIH Clinical Center, volunteers help fulfill a unique mission
– to rapidly translate scientific observations and laboratory discoveries into new ways to diagnose, treat, and prevent disease. More than 350,000 individuals from around the world have participated in clinical research at the Clinical Center since the hospital opened in 1953. Medical discovery leads to better health and health care for the future. Medical discovery depends on research volunteers, people like you.

There are two types of research participants, patient volunteers and healthy volunteers. Patient volunteers are people with specific diseases or conditions who take part in clinical trials. They help medical investigators learn more about their condition or test new medications, procedures, or treatments. A healthy volunteer is a person with no known significant health problems who participates in research to test a new drug, device, or intervention. Healthy volunteers have always played a vital role in medical research.

There is no cost for study-related care received at the Clinical Center. Healthy volunteers who participate in trials here may be compensated for their time and inconvenience.

If you are interested in participating in a study either as a patient volunteer or a healthy volunteer, there are many resources available to help you find a clinical study that is right for you. There are about 1,500 different ongoing clinical studies for healthy and patient volunteers at the Clinical Center each year.

To find out if you are eligible for a clinical research study or to join a registry of healthy research volunteers, contact the Clinical Center: 1-866-444-6676 (TTY: 1-866-411-1010). Staff members can register you by phone or fax and get you started by providing information for a study. For more information visit our website:
http://clinicalcenter.nih.gov/recruit

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Kids and clinical research

One Size Does Not Fit All

Children aren’t small adults when it comes to medical care and research. Medical discoveries from clinical research involving adults do not always translate to treatment or care for children. Some illnesses affect children but not adults. These are reasons why it is important for children to participate in clinical research studies.

According to Dr. Denny Porter, senior investigator for the Eunice Kennedy Shriver National Institute of Child Health and Human Development, "Frequently when we do research testing on children with a rare disease, we do not have age matched controls to compare to. You cannot assume that children have the same values as adults," he said. "If you are studying children with a disease and you find what you think are abnormalities based on looking at adult controls, you may make a mistake."

The only way for researchers like Dr. Porter to acquire age matched controls is through the efforts of healthy volunteers."What you really need are age matched samples so that you can figure out if you are seeing something that is abnormal or something that is a normal process of aging," he explained. Healthy children provide researchers with crucial data needed for comparison. With the help of young research volunteers, researchers can learn more about a disease such as the way it progresses, how to treat it, and appropriate dosages for treatment. As a parent, you can talk to your child and decide whether joining a clinical trial at the NIH Clinical Center is right for your family.

For more information about the role of children at the NIH Clinical Center and how to sign up for a trial, visit our web site: http://www.cc.nih.gov/kidsinresearch

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Need to know: questions for research volunteers

Participating in a clinical research study is an important and personal decision. Whether you are interested in helping advance the future of medicine and health through our healthy volunteer program, or you want to help scientists learn more about a disease or illness that you have experienced personally, there are some important questions to consider when thinking about participating including:

1. What is the purpose of the study?
2. What is required of me and what is my role?
3. Will the study directly benefit me or others?
4. Are there risks? If so, what are they and what are the chances that they will occur?
5. What is the total time involved?
6. Should I discuss my participation in the study with those who are important to me, such as family and friends?
7. Once enrolled, can I decide not to participate in any or all parts of the study?

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Information for patient volunteers	Information for healthy volunteers
Studies of Liver Diseases Study Number: 91-DK-0214 Studies on liver diseases including Hepatitis B, C, and D; primary biliary cirrhosis; nonalcoholic steatohepatitis (NASH); fatty liver disease; autoimmune hepatitis; portal hypertension not due to cirrhosis; acute hepatitis from any cause; and rare or unexplained liver disorders. Participants must be 18 years of age or older. Dry Eye Study Study Number: 09-EI-0135 If your eye doctor has diagnosed you with ocular surface disease, commonly known as dry eye, and you are 18 years or older, you may be eligible to participate. This study will compare visual function when reading computerized versions of eye questionnaires on the web and when completing paper versions of eye questionnaires. Participants will be required to travel to the NIH for an outpatient visit lasting approximately 2 hours and will receive an eye examination. Epilepsy Study Study Number: 01-N-0139 Research study evaluating and treating people with epilepsy. Individuals will undergo standard diagnostic procedures used to determine the type of seizures, causes, and whether standard drug treatment can help them. Participants must be 2 years of age or older. Physical Urticaria Study Study Number: 09-I-0126 Do you or someone you know develop hives when you come into contact with cold, heat, pressure, or other exposures? You could have physical urticaria. If you or a family member are between the ages of 6 months and 65 years old and a physician has diagnosed you with this condition, you may be eligible to participate. The study will explore the body’s role in the inflammatory response which causes hives. A short overnight stay may be required.	Vascular Disease Study Study Number: 07-DK-0163 Healthy overweight black and white women for an investigation of the effect of the American diet on vascular disease risk. This is an outpatient study for pre-menopausal women between the ages of 18 and 49. Childhood Autism Study Study Number: 06-M-0102 NIH is studying the clinical course of autism. Participation includes a comprehensive developmental evaluation and physical exam. Results of these assessments will be shared with the parents. Participants must be between the ages of 1 to 4 years old and available for an initial one and one-half day outpatient evaluation. Bone Marrow Research Study Study Number: 09-I-0049 If you are at least 18 years old and not allergic to any foods, drugs, or other environmental factors, you may be eligible to participate in this research study. The purpose of this study is to better understand allergies and the immune system. The study will include a brief history and physical, and allergy screening. Adult Stem Cell Study Study Number: 06-DK-0142 Volunteers needed for a study designed for the collection of stem cells from the blood of adult humans for use in research studies. Researchers are studying adult stem cells to gain insight into blood diseases. Participants must be18 years of age or older. Carbs vs. Fat Study Study Number: 09-DK-0081 The NIH is looking for overweight, healthy adults, 18 to 45 years old, to volunteer in a clinical research study. The study includes two inpatient visits of up to 13 days followed by a 12-week lifestyle modification program including weight loss counseling, prescribed diet and exercise program. Januvia Study Study Number: 09-DK-0055 Volunteers needed for a study examining the immune function in healthy volunteers given short-term treatment of sitagliptin. Investigators wish to determine if and how sitagliptin alters immune function. Participants must be 18 years or older.
All studies are conducted at the NIH Clinical Center in Bethesda, Maryland. There is no charge for study-related tests, medications, or treatments. Some studies listed in this newsletter may be closed to enrollment at later dates. Contact PRPL for more information at prpl@cc.nih.gov. Compensation may be provided for healthy volunteers. For more information about any of the studies listed above, please call: 1-866-444-6676 TTY: 1-866-411-1010 Se habla español

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NIH Clinical Research Volunteer Program

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