YOUNG ONSET PARKINSON'S
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SEEKING PARTICIPANTS FOR A YOPD RESEARCH STUDY!
SEEKING PARTICIPANTS FOR A RESEARCH STUDY ENTITLED, "UNMET NEEDS OF PEOPLE WITH YOUNG ONSET PARKINSON'S DISEASE"
We are seeking people with young onset Parkinson’s disease (YOPD) to help us gain a clearer understanding of the issues that are most important to you to identify areas of unmet need. Research in YOPD is sparse and rarely have the opinions of those affected been solicited to inform future projects; therefore, we need your help. We know the issues facing those with YOPD are unique and not necessarily the same as those with traditional onset PD. Those with YOPD often have children in the home, are still engaged in the workforce, and have greater depression – we want to quantify these and other issues and, eventually, work to ensure that we have effective interventions that may help.
We wish to include anyone who has been diagnosed with PD prior to the age of 50; if you fit this, we could use your help. We have assembled an online survey that should take you no more than 5 minutes to complete and can be accessed HERE. All responses are completely anonymous. Thank you in advance for your help in identifying the unmet needs of people with YOPD.
MORE ABOUT THIS PROJECT
WHAT ARE WE DOING?
According to the Parkinson’s Foundation, “Young Onset Parkinson’s disease (YOPD) occurs in people younger than 50 years of age. Most people with idiopathic, or typical, PD develop symptoms at 50 years of age or older.” While people with PD share many common symptoms, it is well known that it does not affect everyone the same way, and this is especially true when factors such as age and life stage come into play.
In our mission to educate, empower, and equip the Parkinson’s community, we are continually striving to identify unmet needs. To that end, we have partnered with leaders in the Dallas/Fort Worth Parkinson’s community to create a research project focused specifically on persons with YOPD.
WHY ARE WE DOING IT?
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To identify the unmet needs of the YOPD community
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To give the YOPD community a platform for their voices to be heard
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To create & implement solutions to meet these needs
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To raise awareness regarding these needs and their respective solutions so that organizations and community leaders are better equipped to cater to persons with YOPD
HOW ARE WE DOING IT?
Phase 1
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Conduct a brief but comprehensive survey to identify areas of unmet need, frustration, or dissatisfaction among the YOPD community (the survey will be conducted on a national level; it is not restricted to the DFW metroplex)
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Write & publish a research paper that describes the results of this survey along with proposed solutions
Phase 2
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Implement potential solutions locally in DFW and conduct a study to measure the outcomes and efficacy of said solutions
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Write & publish a second paper which would describe the implementation of solutions and the measured outcomes
WHO IS BEHIND THIS PROJECT?
Bradley McDaniels, PhD
University of North Texas, Department of Rehabilitation and Health Services
Shelley Kurian
Executive Director, Skypass Foundation
Indu Subramanian, MD
David Geffen School of Medicine, UCLA, Department of Neurology Director, PADRECC, West Los Angeles, Veterans Administration
Shilpa Chitnis, MD, PhD, FAAN
University of Texas Southwestern Medical Center – Department of Neurology
QUESTIONS?
If you have questions about this project, please feel free to contact us here.