Georgetown Area Parkinson's Support Group - GAPS
  • Georgetown Area Parkinson's Support Group - GAPS
    • GAPS - Our Mission
    • GAPS - Our Leadership
    • GAPS - Sponsorship
    • GAPS Contact Info
  • GAPS Groups
    • GAPS General Meetings
    • GADS - Georgetown Area Deep Brain Stimulation (DBS) Support Group
    • GAPS Caregiver Support Group
    • GAPS Spanish Speaking Support Group
  • Parkinson's Upcoming Events & Announcements
  • GAPS Calendar
  • Parkinson's Exercise Opportunities
  • GAPS Newsletters
  • Understanding Parkinson's
    • Parkinson's Signs & Symptoms >
      • Tracking Your Parkinson's Symptoms
    • YOUNG-Onset Parkinson's
    • ATYPICAL Parkinsonism >
      • Lewy Body Dementia
      • PSP, CBD, MSA
  • Parkinson's Treatments
    • Movement Disorder Specailists
    • Parkinson's Medications
    • Physical/Occupational Therapies
    • Deep Brain Stimulation
    • Parkinson's Research and Clinical Trials
  • Parkinson's & Veterans
    • Parkinson's and Agent Orange
    • Veterans Benefits
  • Getting Help & Info
    • Parkinson's Organizations and Foundations
    • Health Care Financial Assistance
    • Caregiver & Respite Resources
    • Health and Safety Services
    • Home Care Services
    • Local Support Groups
  • Georgetown Area Parkinson's Support Group - GAPS
    • GAPS - Our Mission
    • GAPS - Our Leadership
    • GAPS - Sponsorship
    • GAPS Contact Info
  • GAPS Groups
    • GAPS General Meetings
    • GADS - Georgetown Area Deep Brain Stimulation (DBS) Support Group
    • GAPS Caregiver Support Group
    • GAPS Spanish Speaking Support Group
  • Parkinson's Upcoming Events & Announcements
  • GAPS Calendar
  • Parkinson's Exercise Opportunities
  • GAPS Newsletters
  • Understanding Parkinson's
    • Parkinson's Signs & Symptoms >
      • Tracking Your Parkinson's Symptoms
    • YOUNG-Onset Parkinson's
    • ATYPICAL Parkinsonism >
      • Lewy Body Dementia
      • PSP, CBD, MSA
  • Parkinson's Treatments
    • Movement Disorder Specailists
    • Parkinson's Medications
    • Physical/Occupational Therapies
    • Deep Brain Stimulation
    • Parkinson's Research and Clinical Trials
  • Parkinson's & Veterans
    • Parkinson's and Agent Orange
    • Veterans Benefits
  • Getting Help & Info
    • Parkinson's Organizations and Foundations
    • Health Care Financial Assistance
    • Caregiver & Respite Resources
    • Health and Safety Services
    • Home Care Services
    • Local Support Groups
Georgetown Area Parkinson's Support Group - GAPS

Parkinson's Research and Clinical Trials

​The following is a list of Parkinson's Research and/or Clinical Trials being conducted in the Georgetown area.  Many of these trials and research studies do not involve medications and are just question/answer research.  Always check with your doctor before changing currently prescribed medications.​
  • ​Michael J Fox Foundation's landmark Parkinson’s Progression Markers Initiative (PPMI) seeks to transform how we diagnose, treat and potentially prevent Parkinson’s. So far, 60,000 volunteers — everyday people just like you, with and without Parkinson’s — have taken the first step to join PPMI. Tens of thousands more are needed, especially men. We have reserved the next spot in the study for you. We hope you’ll get started today.  Click here to start
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​ CLICK:  https://www.michaeljfox.org/your-impact-parkinsons-research  
PPMI offers different ways to get started in the study. Find the best path for you.
·        Recently Diagnosed - PPMI sites are enrolling people diagnosed with Parkinson's within the past two years and not yet taking PD medication. Call 877-525-PPMI to learn more.  Find Your Local PPMI Site
·        Age 60+ without Parkinson's - Age is a risk factor for Parkinson's disease. So is smell loss. PPMI is asking everyone without PD age 60+ and older in the U.S. and Canada to take a scratch-and-sniff test.   Request a Smell Test Today
·        Act Out Your Dreams - Some people may punch, kick or yell while asleep. This condition is called REM sleep behavior disorder or RBD. It can be a risk factor for brain disease. If you have RBD, call 877-525-PPMI.  Read More about RBD in PPMI
·        Anyone Age 18+ in the US - Anyone age 18 and older in the U.S. — with and without Parkinson's — can join PPMI. Share valuable data on health and wellness in our online platform.  Start Sharing with PPMI Online
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  •  ​Fox Insight is an online clinical study where people with Parkinson's disease and their loved ones share information that could transform the search for better treatments.  The Michael J. Fox Foundation has partnered with the world's leading consumer genetics company 23andMe to assemble a more complete picture of Parkinson's by integrating genetic and patient-reported data. 
  For more info:  Parkinson’s disease patient-focused research study | Fox Insight (michaeljfox.org)
  •  Participants Wanted for a Research Study
​Examining the exercise and physical activity needs and values of people with Parkinson’s disease
 
Our partners at the University of Connecticut's goal is to improve the lives of individuals living with Parkinson’s disease through the combination of exercise, support, and technology.

They are looking for people with Parkinson’s disease to participate in a discussion that will be held virtually or in person. Participants will be asked questions about their beliefs, values, and needs for exercise in a group session. The duration of the group session will be 1-2 hours. Participants can select if they would like to participate in a conversation in English or Spanish.
Participants will not benefit from this research. However, they may help others with
Parkinson’s disease to adopt and sustain exercise to better manage their disease.

Participants can select whether they want to participate in person or through a virtual conference meeting. In-person sessions will take place at the University of Connecticut, Kinesiology building, 3107 Horsebarn Hill Rd, Storrs, CT or UConn Health, Outpatient Pavilion, 135 Dowling Way, Farmington, CT.
 
A $50 gift card will be provided to participants after the completion of the research study.

To learn more about this research, contact Cristina Colón-Semenza at cristina.colonsemenza@uconn.edu or 860-486-0019. This research is conducted under the direction of Cristina Colón-Semenza, University of Connecticut. 

  • Research studies at the cognition and action lab (http://ivrylab.berkeley.edu/), focused on the impact of Parkinson's Disease on movement and cognition.

    We are currently recruiting participants for a 1 hour online study that involves using your computer trackpad or mouse. This session will take place over Zoom, Skype, Whatsapp, or whichever method you prefer. If video meetings are new to you, we can also help you set it up over the phone.

    If you have any questions, please do not hesitate to email or call (714-477-3424).
    Rich Ivry
    Professor
    Department of Psychology
    MC 1650
    2121 Berkeley Way, 3rd Floor
    University of California
    Berkeley, CA 94720
  • Research Participation Invitation: Benefits of Yoga for People with Parkinson’s Disease - GAPS members are invited participation in this “Yoga” study because of your diagnosis of Parkinson’s Disease.  The study consists of a survey made up of questions that take a look at the amount of difficulty that you have with motor and non-motor experiences of daily living. The survey will take about 15 minutes to complete and the anticipated benefit of your participation is that the results may contribute to the body of knowledge on Parkinson’s disease and the best practices in treating this condition.   To participate in this research or ask questions about this research, please contact:
Keilie Heinrich, SPT kkh79@txstate.edu    
Bradley Wong: Bmw168@txstate.edu
Emily Lowry: emlowry2@txstate.edu   
Emily Tobben: ent24@txstate.edu
QUESTIONS:   Dr. Denise Gobert 512-716-2652 dgobert@txstate.ed

​
  • Parkinson’s Genetics – PD GENEration!   Join the Study - PD GENEration: Mapping the Future of Parkinson’s Disease is a national initiative that offers genetic testing for clinically relevant Parkinson's-related genes and genetic counseling at NO COST for people with Parkinson’s disease.  At-Home Test - PD GENEration is also offered through an at-home test. To schedule your at-home appointment, enroll now.  https://www.parkinson.org/PDGENEration    
​ Learn more in this video.  https://www.youtube.co

  • Building a Data Base for Automatic Speech Recognition in Parkinson’s disease – LSVT Global has partnered with Google on an exciting research project called Project Euphonia to help improve automatic speech recognition software for people with speech disorders. These disorders may make using devices like Google Home, The Nest and other Smart devices, Siri, Alexa, or speech-to-text frustrating. To do this, we need samples of disordered speech to train the system. LSVT Global is recruiting people with speech disorders to help!  Click here:  https://blog.lsvtglobal.com/project-euphonia/m/watch?v=QBYiMI6Nb8g  
 
  • Telehealth Speech Study - The Motor Speech Laboratory at Purdue University is looking for individuals to participate in a telehealth study on speech. This study has 5 sessions over a period of a month and all sessions are completed online. Participants will be asked to interact with a computer-generated interaction, Nina, while producing different facial movements, providing speech samples and completing surveys. Both video and audio will be recorded during these sessions. Participants will be compensated $10.00 per session with a $20.00 bonus for completing all sessions. Jessica Huber, Ph.D., is the Principal Investigator for this study.  See ​Telemedicine Study Recruitment - Motor Speech Lab (purdue.edu) for more info participation criteria.
If you are interested, contact: Sandy Snyder in the Motor Speech Laboratory at (765) 494-6488 or email snyder33@purdue.edu for more information.​  
​
  • This research project is aimed at looking at the current knowledge about PD-related symptoms among folks with Parkinson Disease and their family members. In addition, we are interested in identifying the current met and unmet needs of the PD community. We plan to reach as many people as possible in Oklahoma and surrounding states of Texas, Arkansas, Kansas, Colorado, and New Mexico. A portion of the study will be completed as part of a graduate thesis project. The surveys will take approximately 30-45 minutes to complete. 
​SURVEY:  https://okstatecas.co1.qualtrics.com/jfe/form/SV_1TRtoZib8ZnP9NH
QUESTIONS: Jaelan Moore  (832)-330-4696  jaelan.d.moore@okstate.edu

  • My name is Rebecca. I am in the process of completing my doctorate in Occupational Therapy at Russell Sage College, NY. Russell Sage is conducting a study regarding dance and movement for individuals with Parkinson’s disease. We aim to gather information regarding the use of rhythmic movement/dance and better understand perceived benefits, barriers, and facilitators to initiation and adherence to a dance program.
     
    We are asking individuals diagnosed with Parkinson’s Disease (PD) to complete an anonymous survey to help us evaluate the utilization and knowledge of dance programs within this community, the perceived benefits of dance, barriers, and facilitators to participation. We hope to share this survey with various people across diverse settings and locations. We are asking if you would be willing to complete, distribute, and/or share this survey with individuals with PD. 
     
    You do not need to be a dancer to participate. All individuals with PD are welcome to participate in this survey!
    The survey link is https://www.surveymonkey.com/r/GDZD68K
     
    The survey is electronic. Participation in this survey is greatly appreciated, and any feedback provides insight into what is currently influencing dance participation amongst individuals with Parkinson’s disease.
     
    Thank you!
    Sincerely, 
    Rebecca Perini, Occupational Therapy Doctorate Student, Russell Sage College
    Advisor: Dayna Maniccia, Russell Sage College, DrPH, MS, Chair, Interdisciplinary Studies Department, Assistant Director of the Center of Teaching & Learning, Program Director & Associate manicd@sage.edu
    Rebecca Streeter (Perini), OTDS
    perinr@sage.edu
    Russell Sage College Occupational Therapy  
    Graduate Assistant Office of Occupational Therapy Department
    Treasurer Student Occupational Therapy Association
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  • My name is Nayanika, and I'm a Research Assistant and Ph.D. student at the UT Voice Lab. The lab director is Dr. Rosemary Lester-Smith, and right now one of the projects we are working on is finding out how speakers with essential tremor, control the tremor in their voice and what we can do to improve that control. 
 
We are recruiting participants with tremor and healthy older participants for our study right now and I have attached flyers of our research.
 
Nayanika Ghosh
Doctoral student
UT Voice Lab
The University of Texas at Austin | Moody College of Communication | Department of Speech, Language, and Hearing Sciences
512-232-4228 | slhs.utexas.edu/research/ut-voice-lab
flyer_ct_evt_tremortreatment_8-26-2022.pdf
File Size: 146 kb
File Type: pdf
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flyer_ct_evt_tremor_8-26-2022.pdf
File Size: 145 kb
File Type: pdf
Download File

flyer_ct_evt_older_control_8-26-2022.pdf
File Size: 156 kb
File Type: pdf
Download File


​PSP Research -
 AllStripes is a research platform designed for rare disease, where patients can contribute to research and accelerate drug development. For more information:  https://www.allstripes.com/psp
allstripes-psp-ucb-flyer-20210429.pdf
File Size: 1373 kb
File Type: pdf
Download File

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  • Other research links
The Fox Trial Finder is an online clinical trial matching tool created by The Michael J. Fox Foundation to make it easier for Parkinson's patients and their loved ones to participate in Parkinson's research. To date, more than 30,000 volunteers have signed up to be matched with more than 300 ongoing PD clinical trials worldwide.
Click here to sign up:  https://www.michaeljfox.org/page.html/Find-a-Trial or https://www.michaeljfox.org/trial-finder or  https://foxtrialfinder.michaeljfox.org

ClinicalTrials.gov is a database of privately and publicly funded clinical studies conducted around the world.  Click here to see current clinical trials - https://www.clinicaltrials.gov/

PD Trial Tracker - analyzing ClinicalTrials.gov for Parkinson’s specific trials — http://www.pdtrialtracker.info

​​European Parkinson’s Disease Association — https://www.epda.eu.com/about-parkinsons/treatments/clinical-trials/

Cure Parkinson’s Trust — https://www.parkinsonsmovement.com/clinical-trials/

​​Parkinson’s Study Group — http://www.parkinson-study-group.org/clinical-trials

​​American Parkinson Disease Association --https://www.apdaparkinson.org/research/clinical-trials/

Center Watch --https://www.centerwatch.com/clinical-trials/listings/condition/117/parkinsons-disease/

Advancing Research | Parkinson's Foundation

​Local research at:
Texas Movement Disorder Specialists, PLLC:  Clinical Research | txmds
​Central Texas Neurology Consultants:  Dr. Peckham:  512-218-1222 x 214/211 (Koni/Cyndel)
​
Brain Donations - 
The importance of brain donation is to help advance science that can lead to the treatment and cure of neurological, neuropsychiatric and neurodevelopmental disorders.  Here are several resources to learn more:
  • https://www.parkinson.org/pd-library/fact-sheets/brain-donation  
  • https://www.psp.org/ineedsupport/braindonation/ 
  • https://www.brainsupportnetwork.org/brain-donation/   
  • https://www.apdaparkinson.org/community/st-louis/resources-support-stl/other-resources/brain-donation/ 


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