News and information about Parkinson's Disease on the First Coast

The number of people affected by Parkinson’s Disease is much larger than thought a mere decade ago.  It is also true that the cure will come through research.  Clinical research (often called clinical trials) involve human participants and are a final and crucial step in development of treatments of PD and its symptoms.  About 85% of all trials are delayed because of lack of participants and 35% never get started.

 

Find out what’s going on in research by checking national organizations web pages listed in the resources section.  A brief description of how PD research is conducted is given in this section.  Then submit your contact information in the confidential registry below.  A critical part of research is the number of participants in a study.

 

A clinical study is a vital step in transforming scientific concept into medical reality.  The process to develop and a treatment to market consists of three steps or phases of experimentation, i.e., Phase I, II, and III as in the following table (furnished by Parkinson’s Disease Foundation).  These phases may take place in different locations and could be conducted by different researchers.  Phase III is critical because it determines the value of the treatment as well as its safety.  And note too, that it generally requires 100 or more participants, usually all volunteers.

 

From the definitions given in the table for Phases I and II studies, we can see that these are the “exploratory” phases.

 

Phase IV is for further evaluations on treatments already on the market.  For example, the University of Florida is conducting a study to see if Azalect reduces the fatigue level in PD patients.  Since Azalect has already been approved and is on the market, the study is classified a Phase IV study.

 

 

 

 

 

The effort in finding a study that fits your needs can be simplified by completing the information requested in the confidential registry.  We will attempt to notify you of research opportunities in the First Coast region for which you might qualify.

 

Find and register for national studies at the National Institute of Health site,  clinicaltrials.gov.  This is a searchable data base of publicly and privately supported clinical studies conducted around the world.  Search for PD trials and then search for a trial that fits your needs.  A second national data base is Foxtrialfinder.org which contains only PD trials.  After signing on to this webpage, you can register, answer a few questions and then receive a list of trials that fit your profile.

 

When you find a possible clinical study, research it, discuss your involvement with your family, your physician and possibly your support group.  Most studies require an Informed Consent document containing all procedures to be performed during the study as well as any compensation offered.  Read it thoroughly before signing.  In other words, make an informed decision.

 

The First Coast Parkinson’s Disease Registry

 

This project will attempt to collect basic information on people who have been diagnosed with PD and who live on the First Coast.  The data will be collected, stored, and used in a manner that assures confidentiality.  The data will be used to make PD research happen faster by connecting people with Parkinson disease to the research community, and to enable an accurate estimate of the prevalence (numbers) of PD in the First Coast Region.

 

A voluntary self-report form will be available soon.  If you send your name and an email address to the email on the Home Page, we will notify you of the availability of the form.