Shake, Rattle and Roll

Spread the Good Word about Clinical Research

I was fortunate enough to be selected to attend the 2009 Clinical Research Learning Institute (CRLI) sponsored by the Parkinson’s Disease Foundation (PDF). It was a phenomenal experience! Everything about it -- from the speakers to the materials to the PDF staff to the accommodations to the fellow participants -- was first class! 

 

PDF is now accepting applications for the 2010 Clinical Research Learning Institute (CRLI), to be held October 21 through October 23, 2010. This year’s Learning Institute will be held in Florham Park, New Jersey and is free of charge, with PDF assuming the costs for participant travel and accommodations.

 

As a CRLI graduate, I’d like to encourage you to inform others who have an interest in Parkinson’s Disease clinical research about this worthwhile opportunity.

 

Dear Friend of PDF, You can contribute to the development of new treatments and a cure for Parkinson’s. How? Apply to the 2010 Clinical Research Learning Institute by Friday, August  27.

Apply Today PDF invites you to apply for a spot at this year’s Clinical Research Learning Institute, a three-day program that trains people living with Parkinson’s to serve as clinical research advocates.   Thursday, October 21 – Saturday, October 23 Florham Park, NJ   Applications Due: Friday, August 27 (enrollment is limited) The Learning Institute offers educational sessions and workshops that will prepare graduates to: Educate their communities about clinical study participation Work with industry and academia to ensure the voices of people living with Parkinson’s are heard Serve as formal representatives on clinical research review and advisory boards (e.g., Institutional Review Boards and Data Safety Monitoring Boards) Work with PDF and other graduates on an ongoing basis to further Parkinson’s research To be eligible, an applicant must be a person with Parkinson’s Disease, living in either the US or Puerto Rico. For those who are selected to attend the Learning Institute, all expenses (registration, travel, hotel, accommodation, meals, etc.) will be covered by the Parkinson’s Disease Foundation.

An application can be downloaded from the PDF website at http://www.pdf.org/crli. 

 

Individuals without Internet access may contact Ronnie Todaro at [email protected] or (800) 457-6676 for an application.  

 

The deadline for applying is August 27, 2010.

 

Thanks in advance for helping to spread the word!

Say Yes to Your Family and Friends' Gifts of Participation

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:

• They are at least 60 years old and with or without a relative affected by Parkinson Disease
• They do not currently have a diagnosis of Parkinson Disease, Alzheimer’s Disease, or other related neurological disorder
• Have no known reason for an abnormal sense of smell (e.g., sinusitis, nasal trauma or sinus surgery)

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 at:
Telephone: 203-401-4300
Toll-Free: 877-401-4300
Email: [email protected]
Website: www.parsinfosource.com

Related Article:  Sniffing Out Parkinson's

 

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Three Parkinson's Movers and Shakers

By Valerie Graham

Parkinson’s activists Valerie Graham, Diane Cook and Kate Kelsall, all living in metro Denver, Colorado, recently returned from the second annual Clinical Research Learning Institute (CRLI or the Institute) hosted by the venerable Parkinson's Disease Foundation (PDF) which was held October 15 through October 17 at the Hamilton Park Hotel and Conference Center in Florham Park, New Jersey. They were among the 38 people with Parkinson's Disease (PD) selected from a pool of approximately 70 highly accomplished and qualified applicants from across the country to participate in this year's Institute.

The Institute consisted of three very intense days and evenings filled with seminars and lectures presented by a faculty of highly respected physicians, researchers, scientists, other medical professionals and business people intimately involved in the clinical research process, not to mention many spirited and enlightening discussions which ensued among the faculty and participants.

The purpose of the CRLI was to provide those selected to participate in the CLRI with the necessary knowledge and skills to become effective advocates with respect to the clinical trial process, explaining how the process works and encouraging members of the PD community to participate more fully in clinical trials, thereby accelerating the discovery and development of more effective therapies and treatments for Parkinson's.

As you might imagine, fresh from graduating from this year's Institute, the fearless threesome are brimming over with enthusiasm and knowledge with respect to the clinical trial process which they gained from attendance at the Institute and are fully committed to disseminating what we have learned to the PD community and to the public at large.

Statistics show that while the number of those being diagnosed with PD is growing exponentially, the number of people who are participating in clinical research trials is shrinking in even greater numbers. Patients must be made to realize that their increasing participation in the clinical research process is absolutely essential if improved treatments and, more importantly, a cure are to be discovered sooner as opposed to later!

Being among the most recent graduates of the CRLI, they are well-equipped to be bearers of this important message and would appreciate any opportunity to share the message with others. Among the many tools provided to us by the PDF for the purpose of spreading the message, they have a PowerPoint presentation about the clinical trial process as well as many useful written materials available for distribution. They believe that this presentation would be particularly appropriate for the many PD support groups.

They are ready to do some Movin’ and Shakin’ to spread the word!

For more information on clinical trials for PD, contact:

Valerie Graham at [email protected]

Diane Cook at: [email protected] and/or

Kate Kelsall at [email protected]

Related Story:

PDF Press Releases and Statements -- 40 People with Parkinson’s Graduate from PDF's Research Advocacy Training Program at:

http://www.pdf.org/en/media_pr/release/pr_1256158327