“Well Beyond Blue” Meeting Allows Patients to Voice Perspective

An upcoming meeting will give people with movement disorders a chance to tell Food and Drug Administration regulators their story – the story of their physical symptoms as well as their emotional ones.

In addition to uncontrolled shaking, jerky movements, trembling hands and poor balance, patients with conditions such as Parkinson’s, Huntington’s and Tourette’s may also experience depression.  Common symptoms include feeling sad, having difficulty sleeping and struggling to concentrate. These symptoms, compounding movement disorders patients’ struggle with motor symptoms, can make optimal wellness feel elusive.  

Yet working toward that goal is important.  “We know that effectively treating the depression that may occur simultaneously with a movement disorder produces overall better health outcomes,” said Phyllis Foxworth, advocacy vice president for the Depression and Bipolar Support Alliance.

At the upcoming “Well Beyond Blue” meeting, patients can provide their perspective to officials in hopes of informing the drug approval process for therapies that treat patients like them.  The FDA strives to include patients’ perspectives in the approval process. In fact, the FDA developed the Patient-Focused Drug Development initiative “to more systematically obtain the patient perspective on specific diseases and their treatments.”

“The Well Beyond Blue meeting provides people a unique and rare opportunity to share with the FDA and medical product developers their personal perspective on why treating their whole health is so important,” noted Foxworth.  Officials and stakeholders will use patients’ input to shape future clinical trials with a goal of improving patient outcomes.

The Depression and Bipolar Support Alliance, a member of the Movement Disorders Policy Coalition, is hosting the November 16 meeting in Silver Springs, Maryland.  Participation via live web-stream is also available for people who cannot attend in person.  Registration is strongly encouraged.

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