Clinical Research & Trials
Patient engagement in research is critical. When patients are actively involved in the process, it more readily leads to treatments that better meet people’s needs and are more likely to be put into practice.
Right from beginning of the grant proposal and ethics committee review stage, researchers are being expected to incorporate patients into their plans more and more. The CFIDS Association is dedicated to helping researchers actively involve patients in their research.
The CFIDS Association of America provides this information as a service to persons with ME/CFS and related disorders who are interested in participating in medical research, and for researchers who are seeking subjects for their studies. The Association 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.
Studies Currently Recruiting Patients with CFS, Related Conditions or Healthy Controls:
DePaul University’s Center for Community Research is currently recruiting respondents for a study on myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) mortality. They are looking to recruit surviving family members, friends, and/or caregivers of individuals who had been diagnosed with ME or CFS and are now deceased.
The intention is to document the experience of these deceased individuals, and the experience of their family and friends, to improve knowledge of ME and CFS and to help those individuals who are currently suffering from the illness. Participants will be asked to complete a confidential online survey and will be given the opportunity to volunteer for an additional in-person or phone interview.
Please read the FULL FLYER HERE and consider inviting anyone you know to participate in this important study.
Date added, April 11. 2104
K-PAX Pharmaceuticals is recruiting for the Synergy Trial: Combining Low-Dose Methylphenidate with a CFS-Specific Nutrient Formula to Support Mitochondrial Function
Principal Investigators: Jose Montoya MD, Nancy Klimas MD, Lucinda Bateman MD, Susan Levine MD
Currently recruiting 120 participants with Chronic Fatigue Syndrome (CFS) and decreased alertness to evaluate the safety and efficacy of a currently available medication (methylphenidate) combined with a CFS-specific Nutrient Formula as a treatment for Chronic Fatigue Syndrome (CFS). The goal of this intervention is to healthfully improve mitochondrial energy production.
Please read the DETAILS HERE
Date added, February 27, 2014
- The Johns Hopkins Bayview Medical Center: Research Study on CFS; Contact Malini Moni at Mmoni2@jhmi.edu or (410) 550-9826 for more information. (added 7/15/13)
- The University of Wisconsin: Post-Exertion Malaise in Women with Chronic Fatigue Syndrome; call 608-262-2457 and mention “Post-Exertion Malaise Study.” (added 6/12/13)
- Pain & Fatigue Study Center; visit www.painandfatigue.com for more information. (added 2/14/13)
- New York Medical College: Understanding Brain Fog in Chronic Fatigue Syndrome; visit www.syncope.org for more information. (added 2/14/13)
- Local Vasoconstriction in Postural Tachycardia Syndrome (POTS); visit www.syncope.org for more information. (updated 2/14/13)
- Research Study: Use of Comprehensive Molecular Profiling With Network & Control Theory To Better Understand Chronic Fatigue Syndrome (CFS) & Model Therapeutic Strategies; contact the study team at (305) 575-7000 ext. 6706 or 4942 for more information. (updated 2/14/13)
- University of Cincinnati Physicians: Fibromyalgia Medication Research Study; email email@example.com for more information. (updated 2/14/13)
- University of Cincinnati Physicians: Fibromyalgia Medication Research Study; email firstname.lastname@example.org for more information. (updated 2/14/13)
- The Good Day Bad Day Study; email email@example.com or Zbarnes@med.miami.edu for more information. (updated 2/14/13)
- The TeleHealth Study; email CFSVideoHealth@med.miami.edu for more information. (updated 2/14/13)
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.
- Clinical Trials Fact Sheet for Women – From the National Women’s Health Information Center
- OHRP Informed Consent Frequently Asked Questions – Published by Office for Human Research Protections (OHRP)
- Clinical trials: from centerwatch – What do clinical trials offer the volunteer?
- Participate in Clinical Studies: Information from the National Institutes of Health’s Clinical Center