Clinical Trial Participation Important to PAN Grassroots Leader

     For Jackie Hunt Christensen, remaining active in the search for a cure for Parkinson’s disease – whether it be through environmental advocacy, advocacy in Minnesota through PAN, or participating in clinical trials – comes with the territory.

“I have always tried looking at it as a contribution to the greater good,” she said.

Serving as PAN’s Minnesota State Coordinator and a member of the Grassroots Communications Committee allows Jackie to remain active in Parkinson’s disease advocacy both on a local and national level.  In 2006, PAN honored Jackie for her work both in Minnesota and around the country with the Milly Kondracke Award for Outstanding Advocacy.  In addition to her advocacy, Jackie remains committed to being involved with clinical trials – and getting others involved in them as well.

“For all of the trials and research I have been a part of, I have tried looking at it as a contribution to the greater good,” she said.  “If I get something out of it, great.  But if not, that’s okay, too.  It is important to advance science in all aspects of Parkinson’s disease.”

Jackie’s first experience with a clinical trial came when she was in college.  The anti-depressant medication being tested seemed to work fine for Jackie, but a few participants in the trial actually died from liver failure and the trial was stopped.

“It seemed to be helping me but, since then, I have chosen studies that will likely be minimal risk to me,” said Jackie.

She has also been involved with other trials throughout the years.  In one trial, a double-blind placebo controlled study (a study in which the participants and the researchers do not know who is receiving the treatment or who is receiving the placebo), Jackie does not believe she received the active treatment because she did not notice any improvement or any side effects, which she has experienced with nearly all other medications.  Even when clinical trials fail, Jackie still believes it is vitally important to stay involved.

“Even when the studies don’t work out the way they hoped, they [the researchers] can still learn from the failure,” she said.

As she looks to the future of clinical trials, and to her participation in the June 24th interactive Webcast, “Emerging Therapies:  From Microscope to Marketplace,” Jackie remains hopeful in recruiting new trial participants and safely and effectively moving new drugs and therapies from laboratories and into the hands of patients.  She will discuss her ideas on trial participation, how trials can be enhanced from the patient perspective, and how trials can speed the development of the latest drugs and therapies.  Her participation as a clinical trial participant and a patient-representative on the Food and Drug Administration’s Parkinson’s Advisory Committee, provide the vital patient’s voice before a drug or therapy is approved.

“I hope to expand the ways that patients can be more involved in designing the trials,” Jackie said. “Sometimes trial parameters are so narrow that it’s really hard to get people enrolled.” She notes that patients are also key to learning about potential side effects and risks from medications and emphasizes that, “safer, more effective drugs and treatments will only be developed if we speak up about our experiences during trials.”

As Jackie moves forward with her advocacy work and providing assistance to other advocates, she continues her hope that clinical trial participation will one day lead to better treatments and a cure for Parkinson’s disease.