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Say Yes to Your Family and Friends' Gifts of Participation

Posted Nov 13 2009 10:00pm

Your family and friends WITHOUT PARKINSON’S are always so eager to help. My husband, Tom, is no exception. In between snow-shoveling and scrutinizing the list of snow closures on TV yesterday, I caught Tom off guard and asked him if he wanted to participate in a clinical trial related to Parkinson’s. Tom readily agreed.

Getting started in the process was so easy that I didn’t know why we hadn’t done it sooner. I’m embarrassed to admit that getting involved in the clinical research process hadn’t even crossed my Parkinson’s radar until being a participant in the Parkinson’s Disease Foundation’s Clinical Research Learning Institute from October 14-17, 2009 in Florham Park, New Jersey.

At the Institute I learned that:

· It is estimated that less than 1 percent of people with PD participate in clinical trials.

· If more people with PD were study volunteers, more studies would be completed on time.

· 71 percent of people with PD are unaware of available clinical studies in their area. (PDtrials Harris Interactive Poll, 2005)

· Close to 75 percent of physicians talk about clinical trials with 10 percent or fewer of their patients with PD. (PDtrials Harris Interactive Poll, 2005)

· The primary motivations of people with PD for participating in a clinical study is a doctor’s recommendation (90 percent), knowing how the research would help the community (84 percent) and access to new medications (80 percent). (GfK Roper Public Affairs and Media Survey, 2008)

Now back to the study in question, which is looking for participants WITHOUT PARKINSON’S, like your family and friends who are always so eager to help.

The Institute for Neurodegenerative Disorders and the University of Pennsylvania are conducting the groundbreaking Parkinson's Associated Risk Study (PARS).

Your family and friends may be eligible to participate in this study if:

One of the primary goals of the PARS is to better understand the risk factors for Parkinson Disease so that they may be identified earlier in its course and ultimately be prevented before the onset of symptoms.

The initial phase of the study is performed by mail and involves a scratch and sniff smell test in addition to questionnaires. Most people find the testing an interesting experience.

The PARS Team is currently looking for:

Individuals with a first-degree relative (sister, brother, mother, father, or children) diagnosed with Parkinson’s Disease

AS WELL AS

Individuals that have no relatives with Parkinson’s Disease

This study is primarily conducted by mail and therefore your family and friends do not need to live in the Connecticut or Philadelphia area to participate.

If you have family or friends who may be willing to participate in the study, please encourage them to complete the following eligibility form online at:

https://www.parsinfosource.com/Parsq1/

Or they may also find this form and additional information about the study through the PARS website at:

www.parsinfosource.com

or by contacting the PARS Study Team directly at:

203-401-4300 or toll-free at 877-401-4300 to have an eligibility form sent to them.

Individuals who are eligible and agree to participate will receive information regarding participation by mail. They may be asked to complete mail-in questionnaires each year or to be evaluated by a neurologist near their home. Some individuals may be asked to undergo more extensive testing. The level of their participation is optional.

Ask your family and friends for their gift of participation in this study. It is the one way they can contribute to finding a cure for Parkinson’s Disease.

For further information, contact the PARS Study Team atTelephone: 203-401-4300
Toll-Free: 877-401-4300
Email:
PARSinfo@indd.org
Website: www.parsinfosource.com

Related Article:  Sniffing Out Parkinson's

 

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