Monday, November 16, 2009

Parkinson's Disease Associated Risk Study Open

From our Parkinson's Focus Today Inbox

Just before Halloween members of Patients Like Me received a letter from the PARS Study Group at the Institute for Neurodegenerative Disorders in New Haven, CT, In collaboration with the University of Pennsylvania in Philadelphia, PA and PatientsLikeMe, they are testing strategies to screen individuals for early signs of Parkinson's disease. The study group is called  PARS (Parkinson's Associated Risk Study).

We hope you will take a look and pass this information and act on it by applying and/or passing it along. It might turn out to be significant to your children or grandchildren, your younger siblings and neices and nephews.  It might just help a total stranger now linked to your efforts by that 6 degrees...

We have excerpted the email below:

Dear PatientsLikeMe Member,

Do you have any friends or family members who have always wanted to participate in a research study? Our partners at the Institute for Neurodegenerative Disorders and University of Pennsylvania are conducting a very exciting study just for them. Be sure to pass it on!

A Message from our Partners

We are writing to inform you of a groundbreaking study to test a strategy to screen individuals for early signs of Parkinson disease. We are seeking your help in identifying individuals who may be eligible to participate in the study

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

We are currently looking for individuals with a first-degree relative diagnosed with Parkinson disease as well as individuals that have no relatives with Parkinson disease to participate. If you have first-degree relatives (sister, brother, mother, father, or children) or friends without a family history of Parkinson disease who may be interested please encourage them to participate!
In order for your relatives or friends to be eligible, they must:

  *  Not carry a diagnosis of Parkinson disease or Alzheimer disease
  *  Be at least 60 years old
  *  Have no known reason for abnormal sense of smell (eg. Nasal trauma or sinus surgery). 
This study is primarily conducted by mail and therefore your relatives do not need to live in the Connecticut or Philadelphia area to participate.
If you have a family member who may be willing to participate in the study, please have them complete the attached eligibility form.
or contacting us directly at the office 203-401-4300 or Toll-Free: 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.

We hope that you will pass along information about this study to your family members and friends!

You may also contact them by email or visit them at their website.  Answers to Questions about how to participate may be found here.

Think what it would have meant to you if your risk symptoms could have been identified perhaps a few years before your diagnosis.  Intervention at that stage might have made a significant difference in the progression not to mention the development of PD.

We've already notified Steve's sister but the other youngsters are just that - too young for this particular study.  So we wrote to PARS to inquire about the age cutoff and received a prompt answer from Susan Mendick, MPH, Molecular Neuroimaging, LLC at the Institute for Neurodegenerative Disorders in Connecticut.  She advised us that the first several studies will be looking at pre-clinical signs of PD.  They do plan to study younger age groups but the chose the 60+ bottom cutoff because that is closest to the "age when most people develop PD." 

You can also link to the Questionaire in pdf format.

Thanks for taking the time to consider and making the effort to help.

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