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Research Studies Recruiting CFS Patients
Biomedical research holds the greatest hope for unraveling the mysteries of chronic fatigue syndrome (CFS). Many CFS patients have inquired about opportunities to participate in research studies. The CFIDS Association of America does not recommend or endorse participation in any specific medical research study and assumes no responsibility for the safe or ethical conduct of the studies listed below.
The Association provides this information as a service to persons with CFS and related disorders who are interested in participating in medical research, and for researchers who are seeking subjects for their studies.
Patients: Please also see databases and other listings below of clinical trials and resources for those considering enrolling in a study.
Researchers: to inquire about listing your study on this page, please write to research@cfids.org. Please let us know when your studies are no longer recruiting subjects so we can keep this page current.
Studies currently recruiting patients with CFS or related conditions
New York Medical College
Local Vasoconstriction in Postural Tachycardia Syndrome (POTS)
Principle Investigator: Julian Stewart, MD, PhD
Co Investigator: Marvin S. Medow, PhD
We are seeking people with Postural Tachycardia Syndrome (POTS) ages 14-29 years of age to participate in a New York Medical College IRB-approved (L-7388-206A2), funded research protocol. The purpose is to investigate the ability to regulate local blood flow in patients with certain circulatory abnormalities. Some people can have symptoms such as dizziness, headache, fatigue, nausea, and palpitations when they are kept upright. This is called “orthostatic intolerance.” When upright, some people may also develop high heart rates along with these symptoms. When this occurs, it is called postural tachycardia syndrome (POTS).
When you come for your testing, we will perform a type of tilt testing and other simple noninvasive tests. If you choose to participate, we will use a technique called intradermal microdialysis in which several tiny tubes are placed in the uppermost layer of the skin, while we simultaneously measure blood flow. Two 3mm biopsy samples will be obtained from the skin of your calf. In addition, we will also be administering Vitamin C through an IV placed in your arm and combine this with tilt-table testing, along with microneurography (MSNA). Muscle Sympathetic Nerve Activity (MSNA) involves an acupuncture like needle placed in a nerve behind your knee. Testing will take place over 4 days and you will be reimbursed $150 per day.
Further details of the research and representative consent forms can be found on our web-site, www.syncope.org
If interested, please reply to:
Courtney Terilli, Research Coordinator
The Center for Hypotension
Department of Pediatrics
19 Bradhurst Avenue, Suite 1600 South
Hawthorne, New York 10532
Telephone: 914-593-8888
Email: courtney_terilli@nymc.edu
Research Study: Use of Comprehensive Molecular Profiling With Network
& Control Theory To Better Understand Chronic Fatigue Syndrome (CFS) & Model Therapeutic Strategies
Principal Investigator: Nancy Klimas, M.D
WHAT IS THE PURPOSE OF THIS STUDY?
The purpose of this study is to use new ways in analyzing genetic testing to help us understand and identify causes of Chronic Fatigue Syndrome.
WHO CAN PARTICIPATE?
35 Healthy Sedentary Controls
35 (men or women) with Chronic Fatigue, between the ages of 30-55 with 4 out
the 8 following symptoms: Non-restorative sleep, cognitive complaints,
myalgia, arthralgia, sore throat, tender lymph nodes, exercise induced relapse
or headache of new and different type.
WHAT DOES PARTICIPATION IN THE STUDY INVOLVE?
The Study involves 3 visits to the Miami VA Hospital:
The 1st visit last 4 hours, 2nd visit lasts 8 hours and the 3rd visit
lasts 30 minutes.
If you are interested in participating in the study please contact the study team at (305) 575-7000 ext. 6706 or 4942.
You will be compensated for your time.
DePaul University
Phone/Email Survey-Based Study Needs Volunteers
We have recently developed new criteria for classifying individuals with chronic fatigue syndrome, which has recently been referred to as Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) - and we are hoping to recruit some volunteers who would be willing to fill out some surveys to help us understand how to more accurately classify individuals with this illness.
We are hoping to gather information from both:
- Healthy individuals
- And individuals [age 18 and over] who have a current diagnosis of ME/CFS.
Individuals from both groups are vital to the success of this project because those who volunteer to fill out surveys for us will be helping our team to develop a new case definition that we hope will potentially improve the research in this field and that may one day get us closer to finding biological markers for this illness.
Your participation in this study is voluntary, but greatly needed.
The information we will obtain in this study has the potential to lead to medical treatments and a better understanding of how to diagnose ME/CFS. We would appreciate any time you can give.
The total amount of time involved in your participation in this study will amount to no more than 3 hours [for completion of a phone interview and surveys] that can be spread out over 3 different days.
If you are interested, please contact our team at (773) 325-4900 or email us at DePaulMECFSResearch@gmail.com.
University of Cincinnati Physicians: Chronic Fatigue Syndrome Research Study
What
This is a research study of an investigational medication for the treatment of chronic fatigue syndrome (CFS) symptoms compared to a placebo (an inactive pill). The study medication is not FDA-approved for the treatment of CFS, but is approved for the treatment of conditions with similar symptoms, including fibromyalgia.
Who
Adults 18 to 65 years old who experience frequent tiredness along with one or more of the following symptoms may be eligible to participate:
- Trouble concentrating or forgetfulness
- Body aches
- Unrefreshing sleep or trouble sleeping
- Tiredness after physical activity
Compensation
Participants will be compensated for time and travel.
Details
For more information, contact Alicia Heller, RN at alicia.heller@uc.edu or 513-475-8115.
University of Cincinnati Physicians: Fibromyalgia Medication Research Study
What
This is a research study to look at how safe and effective a once-a-day pill is for fibromyalgia. This form of the medication is not approved by the United States Food and Drug Administration (FDA), but a twice daily pill form is FDA-approved for use by adults with fibromyalgia.
Who
Adults 18 and older who have been diagnosed with fibromyalgia or who have chronic muscle aches or pains may be eligible to participate.
Compensation
Participants will be compensated for time and travel.
Details
For more information, contact Alicia Heller at alicia.heller@uc.edu or 513-475-8115.
University of Cincinnati Physicians: Fibromyalgia Questionnaire Research Study
What
This is a research study to better understand how fibromyalgia affects quality of life. The study also will look at how well a questionnaire (called the “Fibromyalgia Rating Scale”) assesses fibromyalgia symptoms.
Who
Women and men at least 18 years old who have been diagnosed with fibromyalgia may be eligible to participate.
Pay
Participants may receive up to $70 for the time and travel associated with their participation in the study.
Details
For more information, contact Kerri Earles at alicia.heller@uc.edu or 513-475-8113.
University of Cincinnati Physicians: Fibromyalgia Medication Research Study
What
This is a research study to look at how safe and effective an investigational medication is for teens who have symptoms of fibromyalgia.
Who
Teens 13 to 17 years old who have been diagnosed with fibromyalgia or who have had muscle aches or pains for at least three months may be eligible to participate.
Compensation
Participants will be compensated for time and travel.
Details
For more information, contact Kerri Earles at kerri.earles@uc.edu or 513-475-8113.
Dr. Jose G. Montoya, Associate Professor of Medicine at Stanford, is conducting a study looking for pathogens that may be associated with Chronic Fatigue Syndrome.
He is looking for patients with CFS who live in the San Francisco Bay Area to participate in the study.
Participation in the study involves doing 20-minute phone screening interview. If you are eligible, you will be invited to have a 60-minute study visit, including a blood draw.
There is no cost to participate in the study.
You will not receive any benefit from participation in this study, other than contributing to research.
The results of the blood tests will be available to you within 12 months, but they are for research purposes only.
If you are interested in participating or have any questions, please contact the study coordinator, Jane Norris, at (650) 723-8126.
For general information about participant rights, contact 1-866-680-2906.
*Please note: This correspondence relates to study visits only, not appointments with Dr. Montoya.
Vaccine Healthcare Center at Walter Reed Army Medical Center
Are you a military healthcare beneficiary with CFS or do you know someone who is? If so, a research study is being conducted at the Vaccine Healthcare Center at Walter Reed Army Medical Center. This study will try to identify biomarkers in blood and saliva following an exercise challenge in military personnel who became ill with CFS following a mandatory vaccination. You must be between the age of 18-59 years old and you must be available for a series of tests over a 48-hour period. Eligible participants will receive $200 compensation for 8 blood draws. Please contact Jane Scott or Kaureen Langlie at (202) 782-0411 or email jane.scott@amedd.army.mil or kaureen.langlie@amedd.army.mil.
Use of Comprehensive Molecular Profiling With Network
& Control Theory To Better Understand CFS & Model Therapeutic Strategies
The purpose of this study is to use new ways in analyzing genetic testing to help us understand and identify causes of Chronic Fatigue Syndrome.
WHO CAN PARTICIPATE?
35 Healthy Sedentary Controls
35 (men or women) with Chronic Fatigue, between the ages of 30-55 with 4 out
the 8 following symptoms: Non-restorative sleep, cognitive complaints,
myalgia, arthralgia, sore throat, tender lymph nodes, exercise induced relapse
or headache of new and different type.
WHAT DOES PARTICIPATION IN THE STUDY INVOLVE?
The Study involves 3 visits to the Miami VA Hospital:
The 1st visit last 4 hours,
2nd visit lasts 8 hours and the
3rd visit lasts 30 minutes.
If you are interested in participating in the study please contact the study team at
(305) 575-7000 ext 6706 or 4942
You will be compensated for your time.
The Good Day Bad Day Study
This study is investigating the relationship between immune function and symptom severity. The study involves both those with a diagnosis of chronic fatigue syndrome as well as healthy individuals.
Patients will be asked to come into the university for a total of four visits. During the first visit, you will be asked to fill out questionnaires and receive a complete physical examination. Another assessment will take place when you feel relatively well (Good Day) and another on a day when your symptoms are severe (Bad Day). Then you will be asked to come in for an 18 month follow up. Healthy individuals will also come in for a total of four visits.
The study is also recruiting healthy controls older than 18yrs to come in twice and receive a complete blood work of the immune system as well as $20 dollars.
All participants will be paid $20 per visit to cover travel costs.
The study will be conducted at the offices of Dr. Nancy Klimas, 1120 NW 14th Street, Suite 712, Miami, FL 33136.
To register or request additional information please contact: Phones: 305 243-1568 or 305 243-6218. Email: lgarcia2@med.miami.edu or Zbarnes@med.miami.edu.
The TeleHealth Study
This research project is designed to help individuals with Chronic Fatigue Syndrome understand and manage their condition.
Participants will be provided with information about the nature and effects of stress reactions, how to cope and manage stress, and how to take better care of themselves via an innovative home-based program.
To be eligible to participate, participants must be between the ages of 21-65, speak, read and write English fluently, have a telephone line and reside in Dade or Broward counties within the next nine months. Each participant will receive $50 for each completed assessment.
The TeleHealth study is funded by the National Institutes of Health in collaboration with the Behavioral Medicine Research Center at the University of Miami.
For more information, please call: 305-243-1434.
Proteomics of Cerebrospinal Fluid in CFS: Invitation to Healthy Volunteers
"It's all in your head" is taken seriously in this study of central nervous system problems in CFS. Lumbar punctures are performed to obtain the fluid from around the brain. The proteins and neurohormones in this fluid are analyzed for biomarkers and clues about the molecular mechanisms causing CFS. We are grateful to the CFS volunteers who have participated. We would like to invite additional healthy control subjects to participate in order to understand the variations in fluid contents in the general population, and to better understand the changes in CFS.
Genetic material (DNA) will be stored for future XMRV testing. All tests will be done in confidential fashion. We will not be able to provide participants with their personal test results.
Pain and Fatigue Research Alliance
Georgetown University
Washington DC
PI: James N. Baraniuk, MD
Website: www9.georgetown.edu/faculty/baraniuj
Contacts:
cfsresearch@georgetown.edu
gwiresearch@georgetown.edu
Telephone: 202-687-8231
Gulf War Illness and Healthy Veterans
Veterans who were in the Armed Services between August 1, 1990 and July 31, 1991 are invited to a series of studies. Veterans with no CFS-like symptoms, GWI subjects, and veterans with fibromyalgia, irritable bowel syndrome, PTSD, and allied conditions are invited. The different studies include health assessments, exercise studies, lumbar punctures, fMRI brain scans, limited genetic testing, and novel treatment studies.
Genetic material (DNA) will be stored for future XMRV testing. All tests will be done in confidential fashion. We will not be able to provide participants with their personal test results.
Pain and Fatigue Research Alliance
Georgetown University
Washington DC
PI: James N. Baraniuk, MD
Website: www9.georgetown.edu/faculty/baraniuj
Contacts:
cfsresearch@georgetown.edu
gwiresearch@georgetown.edu
Telephone: 202-687-8231
Other listings for Clinical Trials
- ClinicalTrials.gov is the National Institutes of Health's database with information on more than 4,000 federal and private medical studies involving patients at more than 47,000 locations nationwide. Center Watch Clinical Trials Listing Service lists more than 41,000 industry- and government-sponsored clinical trials, as well as new drug therapies recently approved by the FDA.
- Current Controlled Trials is a multi-national effort to provide information about thousands of research studies worldwide.
Resources For Those Considering Enrolling in a Study
Here are some resources to help you evaluate whether participating in a research study is right for you. Please consult with your personal physician about such matters for further information.
Last updated 8/9/2011
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