Opportunity to participate in research from home – anywhere in the US
Staying Connected through Communication Survey
The University of Washington SPEAC Lab is looking for individuals with select communication-related diagnoses to answer survey questions about their communication experiences. This multi-arm survey is open to adults (and their families) in the US with any of the following diagnoses (any duration / treatment history):
Parkinson’s disease
Head and Neck Cancer (any type / location / treatment)
Laryngectomy
Laryngeal dystonia (spasmodic dysphonia)
Participants will be asked to nominate at least one family member, friend, or coworker to also answer survey questions. Your participation will help healthcare providers support others with communication disorders and the important people in their lives to stay connected through communication. This is an online survey study that will take about 30-45 minutes. We can also mail a paper survey upon request. People with the communication-related diagnosis and their family / friends / coworkers will complete SEPARATE surveys. This survey is open to anyone living in the U.S. Each participant will be mailed $25 upon survey completion.
This NIH-funded project focuses on the life participation impact of communication disorders associated with these diagnoses on both the person with the diagnosis and close family / friends. The end-products will be additional clinical resources to support clinicians in expanding participation-focused interventions that include clients and families / key communication partners.
The person with the diagnosis needs to start first and then nominate a family member / friend /coworker in the survey to participate.
To begin, click the link below. Participation is all remote and online (paper surveys by request) so people can join anywhere in the US. For questions, please contact: speaclab@uw.edu
Begin here: https://sites.uw.edu/speaclab/
Thank you for your help! We appreciate your time helping to shape future communication care.
September is Dystonia Awareness Month
Dystonia is the third most common movement disorder.
An estimated 250,000 people in the United States have dystonia, a chronic movement disorder affecting the brain and nervous system. It is the third most common movement disorder after essential tremor and Parkinson disease. Dystonia causes excessive, uncontrollable muscle spasms. The muscle spasms twist the body and limbs into involuntary movements and awkward postures. Estimates suggest that 70% of patients are misdiagnosed prior to a dystonia diagnosis. Spasmodic Dysphonia is a focal dystonia affecting the vocal folds and larynx, and resulting in a voice disorder.
The mission of the Dystonia Medical Research Foundation (DMRF) is to advance research for more treatments and ultimately a cure, to promote awareness and education, and to support the needs and well being of affected individuals and families.
Visit their website and join one of their excellent webinars to learn more.
Do you have a speech, voice or swallowing problem? Schedule an appointment:
941-204-1515 or email: info@voiceaerobicsdvd.com. In-person and telepractice options.
My Mission: To enlist individuals in their treatment, and help them express their personality & spirit through voice. To educate and empower. Mary Spremulli, MA, CCC-SLP * FiTOUR® Group Exercise Instructor * Voice Aerobics® A Whole Body Approach to Voice Practice
Liliana, thank you for your email. The current survey is open to anyone currently living in the US.
Hi,
I was diagnosted with Spasmodic dysphonia 9 years ago. I live in Toronto area, Canada.
Could I participate in the survey? My voice is almost recovered.