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VOLUNTEER FOR RESEARCH

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We have new studies currently recruiting participants! Please see the information below and join us to help move the understanding of dystonia forward! 
 
Now Recruiting: Central Mechanisms and Treatment Response of Sodium Oxybate in Spasmodic Dysphonia and Voice Tremor
 
This study aims to determine the central mechanisms underlying symptom improvement following the use of sodium oxybate (Xyrem), a possible novel oral medication for the treatment of spasmodic dysphonia and voice tremor. You are invited to participate in this study if you have spasmodic dysphonia with or without voice tremor. This study includes the intake of the investigational drug (sodium oxybate) and MRI of the brain before and after drug administration. The study is conducted at Massachusetts Eye and Ear and the Martinos Center for Biomedical Imaging. The study will include an MRI scan of your brain and a blood draw for genetic testing. Funding for this study is provided by the National Institute on Deafness and Other Communications Disorders (NIDCD), National Institutes of Health (NIH), R01DC012545 grant. All research procedures have been reviewed and approved by the Institutional Review Board (IRB) of Massachusetts Eye and Ear Infirmary, Human Subject Committee.
 
Now Recruiting: Imaging Genetics of Spasmodic Dysphonia
 
The purpose of this research project is to investigate the relationship between brain changes and genetic risk factors in patients with and without a family history of spasmodic dystonia. You are invited to participate in this study if you have spasmodic dysphonia, you are an unaffected member of a patient with spasmodic dysphonia, or you are a healthy individual. We are especially interested in patients with spasmodic dysphonia who have one or more family members affected with dystonia and their relatives, as well as in unaffected, healthy relatives of patients with an onset of symptoms earlier than 35 years of age. The study is conducted at Massachusetts Eye and Ear and the Martinos Center for Biomedical Imaging. The study will include an MRI scan of your brain and a blood draw for genetic testing. Funding for this study is provided by the National Institute on Deafness and Other Communications Disorders (NIDCD), National Institutes of Health (NIH),  R01DC011805 grant. All research procedures have been reviewed and approved by the Institutional Review Board (IRB) of Massachusetts Eye and Ear Infirmary, Human Subject Committee.
 
Initial Study Contact and Information
 
To obtain detailed information about the study and your eligibility for participation, please contact us by phone (617) 573-6016 or e-mail Simonyan_Lab@meei.harvard.edu. The preliminary screening will take approximately 20 minutes of your time. If you are eligible for the study participation, we will schedule your visit with our research team at your convenience. Upon the study completion, your out-of-town and/or local travel expenses associated with the study participation will be reimbursed, and you will receive up to $200 compensation for your time and efforts. 

Frequently Asked Questions About Volunteering for Research Studies

Why should I consider volunteering for a research study?

It is simple! A research study could not proceed without research volunteers. Although you may not receive direct benefits from study participation, we will gather invaluable information about how your brain is organized and functions. This information may be compared between individuals in different populations, for example, healthy subjects and patients with dystonia. The research studies give us knowledge that may help people in the future.

What are the procedures involved with the participation in a research study?

Once you contact us, we will explain the details of the study and ask several questions to determine whether you meet the study eligibility criteria. If you qualify for participation, we will schedule your visit with us. During your visit, we will go over the study procedures in greater detail and obtain your written consent. Depending on the specific study procedures, we may acquire detailed information about your medical and family history, record your voice and speech, and administer tests to examine your general development, memory, handedness, sensory perception, and cognitive skills. We may also ask you to donate a small amount of blood for genetic testing. If you meet the study criteria, we may ask you to participate in the study involving a new investigational drug. We may also ask you to undergo an MRI, during which you will need to lie still for some time, as well as perform different tasks, for example, sentence production or finger tapping.

Please keep in mind that your participation in research studies is entirely voluntary. You may choose not to participate. If you decide to participate in the research study, you may withdraw at any time without penalty.

Is MRI invasive and does it use radiation?

No! Unlike X-ray, CT, and PET scans, MRIs do not use radiation and is considered a non-invasive procedure. Instead, MRIs use a strong magnetic field and radio waves to take pictures of your brain. The MRI scanner is a metal cylinder surrounded by a strong magnetic field. During the MRI, you will lie on a table that can slide in and out of the cylinder. While in the scanner, you will hear a loud knocking noise, for which you will be fitted with earplugs or earmuffs to muffle the sound. You will be able to communicate with the MRI staff at all times during your scan, and you may ask to be removed from the machine at any time. 
People are at risk for injury from the MRI magnet if they have pacemakers or other implanted electrical devices, brain stimulators, some types of dental implants, aneurysm clips (metal clips on the wall of a large artery), metallic prostheses (including metal pins and rods, heart valves, and cochlear implants), permanent eyeliner, implanted delivery pump, or shrapnel fragments. Welders and metal workers are also at risk for injury because of possible small metal fragments in the eye, of which they might be unaware. You will be screened for these conditions before having an MRI scan, and if you have any, you will not receive a scan. If you have a question about any metal objects being present in your body, you should inform our staff. 
In addition, all magnetic objects (watches, coins, jewelry, credit cards, etc.) must be removed before entering the MRI scan room. It is not known if MRI is completely safe for a developing fetus. Therefore, all women of childbearing potential will have a pregnancy test performed no more than 24 hours before the MRI scan. The scan will not be done if the pregnancy test is positive.

Will I receive the study results?

It depends. We will inform you if any significant abnormalities are identified as a result of any tests in the study and we will refer you for follow-up clinical care. We will inform female participants of the results of pregnancy testing. We will, however, not inform you of our research findings, including genetic testing, until the study is complete. At the study completion and publication of research findings, we will send a letter describing our findings to all participants.

Will I be reimbursed for my time and effort?

Yes! You will be reimbursed for your time and effort according to the research protocol’s guidelines. If you are an out-of-town patient who is eligible and participates in the study, your research-related travel expenses will be reimbursed, pending approval.