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“Registry studies” another aid to research

May 4, 2015 by The Corvallis Clinic

When most people think of clinical research studies, they think of experimental treatments such as investigational oral or injectable medications.  However, not all studies involve a treatment intervention.  Some studies are designed to simply track the health and disease progression of patients who meet study criteria. 

Such studies are called “registry studies,” and the patients in these studies are carefully selected because they have a disease or condition of interest.  Although registry studies do not provide any treatment, these studies are an important way for medical researchers to learn more about medications that are already approved and effects they have on patients in a real-world setting. The information collected from these studies may ultimately lead to advances in treatment.

The Clinical Research Center is currently looking for volunteers to participate in a registry study for those with relapsing forms of multiple sclerosis (MS).  The purpose of the study is to follow registry patients for five years to collect long-term safety information.  Patients in this study will include those with a newly prescribed FDA-approved disease-modifying therapy (a treatment designed to reduce disease activity and progression) for MS. For this study, the FDA approved disease modifying therapies allowed are: Aubagio, Avonex, Betaseron, Copaxone, Extavia, Gilenya, Plegridy, Rebif, and Tecfidera.

In addition, patients who are changing from one disease-modifying therapy to another may also be eligible for enrollment. 

Registry study participants will continue with their regular treatment by their own doctor and will fill their own prescriptions.  It may be possible to combine study visits with regular visits to the patient’s treating physician. All patients will have a study-provided skin exam and will have the option to complete a set of surveys; some patients will also have an eye exam or heart tests such as an ECG (an exam which traces the electrical activity of the heart).  At each study visit, patients will be asked about any changes to their medications or about any changes to their health, MS related or not. 

The MS registry study is the first at the Clinical Research Center with neurologist Dr. Weijia “Alex” Wang at the helm.  Dr. Wang’s expertise as a neurologist and his experience as a neuroscience researcher at Cornell, Mount Sinai and JFK Medical Centers makes him the ideal doctor for this important research. 

For more information about the registry study, or any of our other clinical trials, contact the Clinical Research Center at 541-766-2163 or send an email to research@corvallisclinic.com.  You can also follow us on Facebook at https://www.facebook.com/corvallisclinicresearch.

– Julie Carrico is Associate Coordinator of The Corvallis Clinical Research Center 

Filed Under: Clinical Research

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