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Participant Perspective: My Experience in a Parkinson’s Clinical Trial

Aug 21 2007

I was diagnosed with Parkinson’s disease (PD) in January 2003. I immediately tried to find out everything I could about the disease. I learned it is progressive and incurable. But I kept telling myself there must be something I could do to fight it. Then I stumbled across “clinical trials” as I searched the internet.

I found a listing of clinical trials for PD and located the ones in my community. I focused on one in particular with the potential to be neuroprotective. It had shown promising results on tests on primates. It had also shown to be safe in the initial trial on humans.

The key criteria to join the trial was to not have begun any PD medicines. While my doctor had urged me to start on PD medicines, I had refused to take any because my symptoms were not yet debilitating.

I printed out the trial information and made an appointment with my neurologist. I showed him the info – which he read with interest. He’d never heard of the trial, but said I met the profile. He asked if I signed up for the trial, to let him know. I found it interesting and alarming that he hadn’t known anything about the clinical trial. Why hadn’t he? Here was a trial with great promise – to slow or stop the progression of PD! If I got the drug, and it worked, I’d have the opportunity to get it years before the general population – years during which the progression of this horrible disease would be slowed down, or even stopped.

So why hadn’t my doctor informed me about clinical trials? I thought it should have been an option for my treatment. Why had I been the one to inform him?

In 2005, PDtrials conducted a Harris poll to determine why so few people with Parkinson’s (PWPs) participate in clinical trials and identify what barriers there were keeping PWPs from participating. There were some surprising results from the poll:

• Nearly all (95 percent) of the patients who were surveyed agreed that clinical trials for Parkinson’s are necessary to find better treatments, yet only 11 percent reported their doctor ever suggested participating in a trial.
• Of those PWPs surveyed who were aware of trials, only 11 percent of them had received information about trials from their doctors.
• About 40 percent of the PWPs surveyed had learned about trials from support groups, and 27 percent had learned about trials from other PWPs.
• Only 14 percent of primary care physicians, 21 percent of neurologists, and 18 percent of PWPs surveyed indicated that they were somewhat or very satisfied with the amount of information available about clinical trials for Parkinson’s disease.
• Only one percent of PWPs participated in clinical trials.

The current number of PWPs who participate in clinical trials and studies is far short of the number that researchers anticipate will be needed over the next two to three years for new trials. Because of a growing concern within the Parkinson’s community about low levels of participation in trials, PDtrials was created. PDtrials is an educational effort initiated by a consortium of national Parkinson's organizations, led by the Parkinson's Disease Foundation (PDF). Its purpose is to increase information and awareness about clinical trials. Their website, www.PDtrials.org, is an excellent source for PWPs to find current information about clinical trials.

I volunteer for PDtrials. You may see me at a local event handing out pamphlets from PDtrials, and answering questions.

There are many types of clinical trials for PD:
Neurorestoration: These trials focus on ways to restore the brain cells damaged by Parkinson’s disease.
Neuroprotective: These trials focus on slowing down or stopping the progression of brain cell loss.
Movement symptoms: These trials focus on movement symptoms: tremors, rigidity, freezing attacks, difficulty walking, loss of fine motor control, and balance problems.
Non-movement symptoms: These trials focus on non-movement symptoms: fatigue, depression, difficulty speaking, loss of facial expression, vision changes, and a diminished sense of smell.
Genetic - These trials investigate possible hereditary connections to the disease.

These types of trials often take place over long periods of time.

There are always new clinical trials starting. If you go to www.PDtrials.org and don’t find one today that is a match for you, check back in a couple of months. There may be something new by then. Don’t give up! Remember that no new treatment (and no cure) will be available until it has completed clinical trials. Please consider joining one.

My own clinical trial story unfortunately ended in disappointment. After having participated for two years, the trial was abruptly halted because it had failed. The people who got the drug actually deteriorated slightly faster than the people on the placebo! (I learned that I had received the lowest dose of the drug rather than the placebo.)

These results illustrate there is no guarantee about positive results when you join a clinical trial. Even though I had done extensive research prior to joining the trial, learning the drug had shown great promise – it failed.

Regardless of the trial’s failure, I am philosophical about my participation. If the drug had worked as hoped, I’d have been jubilant, as would have been my comrades in the trial. As it turned out, I was glad I had been taking the lowest dose. In the end, the experience won't keep me from joining future trials. I’ll do the same extensive research and take my chances.

I hope to see you soon to talk to you about PDtrials.

Source: Reprinted with the permission of Jean Burns from the Winter 2007 "Power over Parkinson's Newsletter," the newsletter of the Arizona Chapter of APDA.
Source URL: http://www.azapda.org/newsletter/news-january07/winter01.htm