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By Sheryl Jedlinski

When Jean learned that the NIH screens people with Parkinson’s (PWP) to match them to appropriate clinical trials, she immediately applied. After all, she said, her Parkinson’s was slowly, but steadily progressing, and would not go away on its own. She would have only herself to blame if she didn’t opt to be part of the solution and participate in clinical trials.

Looking back, Jeans says, her visit to the NIH Parkinson Center in Bethesda, MD, was everything she had hoped it would be. She saw a Movement Disorders Specialist (MDS) who confirmed that her current course of treatment was working well for her and found a suitable medical device study she plans to begin in October.

How did Jean get the ball rolling?

Jean first had to have her MDS send a letter confirming her Parkinson’s diagnosis, providing the results of her latest neurological tests, and listing her current medications and supplements. Jean then downloaded and completed detailed health background forms for submission.         

Once everything was in order, Jean was off to the NIH.The NIH made things as smooth and easy as possible, arranging shuttles to and from the airport, and to and from her hotel to their offices. Everything went according to the typed instructions she had been given before she left home.  

“Everyone was kind, helpful, knowledgeable and genuinely glad to have me there to work with,” Jean said.

What did Jean do at the NIH?

Jean first met with a nurse who took her vital statistics, gave her a complete physical exam, and drew blood for genetic testing. Next, she saw an MDS who did a complete neurological exam, went over the results with her, and made recommendations, including that she use a walking stick for increased stability. A few weeks after she returned home, both Jean and her regular MDS received copies of her evaluation.

Finding herself with some extra time, Jean chose to participate in a short study where the stiffness in her wrist was evaluated first by an MDS, and then by a machine. (see photo above)


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Jean at the NIH

Who should contact the NIH?

Any PWP may ask their health care provider to refer them to NIH/NINDS/Parkinson Disease Program. It's as easy as a phone call.

You may want to go to:

  • get a second opinion to confirm your diagnosis
  • get an evaluation of current status
  • be evaluated to participate in a specific genetics, device or drug trial

The NIH/NINDS welcomes PWP of all ages, genders, and cultural backgrounds to participate in clinical research studies, and the NIH covers the cost of most travel methods and lodging.

For general information and travel, contact:

Mae Brooks, Patient Care Coordinator
voice: 301-496-4604 or 800-362-3479
E-Mail: brooksm @ ninds.nih.gov
Fax: 301-496-6609

For information about research studies related to PD:

Beverly McElroy, CNRN
Research Nurse Specialist
Office of the Clinical Director
Parkinson's Disease Program
voice: 301-402-4479 fax: 301-480-2518
Page Operator: 301-496-1211




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