What It’s Like to Volunteer in a Research Study - Ep32 Kessler Foundation Podcasts

Read the transcript at https://kesslerfoundation.org/sites/default/files/2022-01/What%20It%E2%80%99s%20Like%20to%20Volunteer%20in%20a%20Research%20Study-Ep32-TRANSCRIPT_0.pdf

Ever wonder what it’s like to become a participant in a clinical research study? This podcast outlines all aspects of recruitment, vetting, protocols, and considerations for joining a study and dispels common misconceptions often fostered by Hollywood movies or TV shows. Jessica Ganga, Communications & Digital Media Coordinator at the Foundation, moderates a panel of research coordinators for mobility, spinal cord injury (SCI), stroke, and traumatic brain injury (TBI) and the Foundation's recruitment manager. They share how volunteers help Kessler Foundation further its clinical research on advancing treatments, which impact the lives of individuals with disabilities worldwide. Volunteers are the heart of our research!

Learn more about the panel:
Rachel Byrne, Senior Research Coordinator (SCI)
https://kesslerfoundation.org/aboutus/Rachel%20Byrne

Kate Goworek, Research Coordinator (Mobility)
https://kesslerfoundation.org/aboutus/Kathleen%20Goworek

Jenny Masmela, Senior Research Coordinator (Stroke)
https://kesslerfoundation.org/aboutus/Jenny%20Masmela

Sam Schmidt, Research Recruitment Manager
https://kesslerfoundation.org/aboutus/Samantha%20Schmidt

Angela Smith, Senior Research Coordinator (TBI)
https://kesslerfoundation.org/aboutus/Angela%20Smith

Frequently Asked Questions about the Foundation's Research - https://kesslerfoundation.org/research-faq

Volunteers are the heart of our research! Interested in joining a study? For more information on in-person and tele-studies, go to https://kesslerfoundation.org/join-our-research-studies

Definitions/Keywords
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What is spatial neglect?
Patients who have had a stroke or traumatic brain injury may have a neurological syndrome called spatial neglect, which affects their ability to pay attention to their surroundings and body parts on the less affected side (the left side for patients with right brain injury). Spatial neglect is disabling. Patients may 'forget' to shave, groom, or dress the left side of their bodies. They also have major problems with driving, reading, and balance. https://kesslerfoundation.org/research/stroke/rehabilitation/spatial-neglect/caregiver https://kesslerfoundation.org/research/stroke/rehabilitation/spatial-neglect/professional

What is KF-NAP®?
Kessler Foundation Neglect Assessment Process (KF-NAP®) is an assessment tool that may help clinicians detect the presence of spatial neglect and measure the severity of the syndrome.

What is KF-PAT®? Kessler Foundation Prism Adaptation Treatment (KF-PAT®) is implemented in occupational therapy for post-stroke spatial neglect. Including prism adaptation treatment in standard of care for patients with post-stroke spatial neglect improved functional and cognitive outcomes.

What is MRI contrast
There are two major types of Magnetic Resonance Imaging (MRI) scans: with contrast and non-contrast. The main distinction is that for contrast MRIs, a dye (gadolinium-based) is given to the patient intravenously before the scan. Contrast is often order by a physician who wants to highlight a particular part of the body.

What is HIPPA?
The Health Insurance Portability and Accountability Act of 1996 (HIPAA) is a federal law that required the creation of national standards to protect sensitive patient health information from being disclosed without the patient’s consent or knowledge. For more information, go to https://www.hhs.gov/hipaa/for-professionals/privacy/index.html

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