Fibromyalgia Research Week 2014 Announcements

Crowdsourcing to Fund New FM Scientific Study on Light Sensitivity! OHSU Needs Your Videos

Kim Dupree Jones, NFP, PhD, the head of the Fibromyalgia Research Program at Oregon Health and Science University is ready to post a research study to a crowd sourcing site to raise money to fund a functional MRI/Light Sensitivity in Fibromyalgia study. Besides the written stories she has collected from her patients, she is in need of a 2-4 minute "YouTube" type of audio and visual recording of someone telling her/his story about light sensitivity specific to their fibromyalgia symptoms. The crowd sourcing donations will all be used for the MRI equipment time needed to fulfill the intent and needs of the study. What an exciting opportunity for you to get involved in a fibromyalgia scientific study! The NFMCPA will make an announcement with the crowd sourcing donation fun as soon as her project is ready to go live with the 2-4 minute video chosen from the submitted videos. Dr. Jones looks forward to hearing from you. Please send your video to Dr. Jones at info@fmcpaware.org. Questions? Please contact us at info@fmcpaware.org. Thanks!

Washington University in St. Louis, School of Medicine: Patient Perspective Survey for Research Outcomes

Dr. Simon Haroutounian is performing a survey to identify outcomes assessment fields which are important from chronic pain patients' perspective. This is a preliminary step for designing a clinical study aimed at improving patient outcomes in chronic pain. Participants needed: 30 people with fibromyalgia or other chronic pain with duration above 3 months. There are no other prerequisites, except for some balance between male and female participants. Please contact Stacie at info@fmcpaware.org for the link to this survey.

Georgegown University: Exertional Exhaustion in Chronic Fatigue Syndrome (CFS)

Dr. James Baraniuk, Georgetown University is recruiting patients and healthy controls for his current study. Dr. Barankiuk is investigating if there are similarities between Gulf War Illness and CFS that are related to problems in the changes in the brain in a previous study*. For more information, please go to http://fibrofightclub.tumblr.com. (*PLOSONE: Increased Brain White Matter Axial Diffusivity Associated with Fatigue, Pain and Hyperalgesia in Gulf War Illness http://dx.plos.org/10.1371/journal.pone.0058493

CenterWatch

CenterWatch lists thousands of industry-sponsored clinical trials which are actively recruiting patients. You can search for clinical trials by medical condition, therapeutic area and location. Go to http://centerwatch.com/clinical-trials/listings/condition/218/fibromyalgia and http://centerwatch.com/clinical-trials/listings/condition/45/chronic-pain to find information about research near you.

University of Washington: COMBAT-FM

Dr. Dennis Turk, principle investigator on Combined Behavioral and Analgesic Trial for Fibromyalgia (COMBAT-FM). A double blind efficacy study, the drug treatment (Tramadol vs placebo) will be compared with Behavioral Health Treatments (Cognitive Behavior Therapy vs Health Education) for patients with fibromyalgia. Participants are being recruited at the University of Washington (Seattle, WA) and the University of Rochester (Rochester, NY). ClinicalTrials.gov identifier: NCTO1598753. For more information, please go to: http://clinicaltrials.gov/ct2/show/study/NCT01598753?term=dworkin&rank=6#contacts

ClinicalTrials.gov

If you have been diagnosed with fibromyalgia or believe that you have had this disease, please contact ClincialTrials.gov via their Fibromyalgia Clinical Trials contact email box at http://www.clinicaltrialsgps.com/clinical-trials-indications/fibromyalgia/ Several new trials are posted for a wide variety of studies: balance, brain imaging, medication, minimal transcranial electrotherapy, training for teens, etc. (Recruitment ends December 2014 for BEdtime SublingualTNX-102 SL as FM Intervention Therapy BESTFIT: CO, FL(2), MA, MD, MS (2), OH (3), PA, SC, WA)

University of Michigan: Brain Electrostimulation

Dr. Daniel Clauw, principle investigator on Reduced Impedance Noninvasive Cortical Electrostimulation (RINCE). An interventional study to evaluate the mechanisms of noninvasive electrostimulation therapy (RINCE). Primary outcome measure will be change from baseline in self-reported 24-hour average pain intensity. Participants are being recruited at the University of Michigan, Ann Arbor. ClinicalTrials.gov identifier: NPT-201-UM. For more information, please go to: http://www.clinicaltrialsgps.com/search-clinical-trials/trial-40188/?Location=2125

Albany Medical College, Neurosciences Institute: Nerve Endings

Dr. Charles Argoff, lead investigator, is looking for healthy volunteers and patients with painful fibromyalgia (FM) to take part in a research study to find out how an FDA approved medication works on nerve endings in people with FM. This FDA-approved treatment for FM may relieve FM symptoms with pain reduction and improved physical function. By relieving your fibromyalgia symptoms, you may be able to do more of the things you want and need to do. Research Protocol: DUL2009-FFMS

•   Visits will be done at the Albany Medical Center Neurology Clinic in Albany, New York
•   Healthy volunteers will have 1 to 2 visits over approximately 2 weeks and will not be required to take study medication.
•   Patients with fibromyalgia will have 4 visits over 8 to 10 weeks.
•   Compensation will be provided.

For more information, please contact: Margaret Czerwinski, Clinical Research Nurse, at (518) 262-0034

Special note to fibromyalgia and chronic pain researchers: Please contact us with information about your research (must include IRB). Email to: info@fmcpaware.org