Volunteers are needed to take part in a new online study on the support needs of persons with rare disorders, including facial paralysis.
AWaRDS Study: Adults with Rare Disorders Support
What is the study about?
In partnership with the National Organization for Rare Disorders, this will be the first large-scale study about the information and psychosocial support needs of people living with rare disorders. The purpose of this research study is to assess these needs, from the perspectives of people with a variety of rare disorders, to find similarities and differences across disorders. To ensure that results reflect the diversity of the rare disease community, it is crucial that as many people living with a rare disease as possible take part.
What would I do as a study participant?
There are two ways to participate. 1) You can follow this link http://bit.ly/2hWZLr2 to take a 40-minute online survey about your experiences with and information and support needs related to your rare disorder (paper forms are available by request). If it is physically difficult to respond, someone may enter your responses for you. 2) During the survey, you can opt to sign up for a second study, which involves an online focus group about the information and psychosocial support needs with others with rare disorders. You must participate in the survey in order to be eligible for the focus group, but the focus group study is not required to participate in the survey. You will be paid $20 for participating in the focus group.
Who is eligible to participate?
You must be an adult or the age of majority in your state, be able to communicate in English, and have a rare disease or disorder or undiagnosed rare condition. Caregivers who do not have a rare disorder themselves are NOT eligible to participate at this time. A disease is generally considered rare if it affects fewer than 200,000 affected individuals in the United States or fewer than 1 in 2,000 in Europe. A list of rare diseases can be found here: https://rarediseases.info.nih.
What will we do with study findings?
We will send a summary of results to all participants. To help NORD, rare disorder organizations, and healthcare professions meet the needs of people with rare disorders, results will be shared through reports, conference presentations, scientific publications.
Who are the researchers?
Kathleen Bogart, PhD, Principal Investigator, Assistant Professor of Psychology at Oregon State University, studies psychosocial needs of people with rare disorders and has a rare disorder herself. She also serves on the Board of Directors of a NORD member organization. Contact her at Kathleen.firstname.lastname@example.org
Veronica Irvin, PhD, MPH, Co-Investigator, is Assistant Professor of Public Health at OSU. She has experience analyzing information offered by support organizations.
Help make this the largest study on living with a rare disorder! Please share this with others who may be interested in participating.
Volunteers Needed for Research Study on “Understanding the Social Impact of Facial Paralysis”
A research project is underway to explore the social, professional and personal impact of facial paralysis. The study is being led by Dr. Faye Wachs, Professor of Sociology at California State Polytechnic University – Pomona. She is currently recruiting persons who have been impacted by facial paralysis at some point in their life for a one-on-one interview (either in person, or by phone or internet). She is also interested in talking with family members of affected persons.
Dr. Wachs brings a personal connection to this project, as she herself has experienced synkinesis as a result of Bell’s palsy.
The summary of these interviews will be compiled into a future book-length manuscript on the subject. All names will be fictionalized for the purpose of this research project (unless requested otherwise)
If you are interested in participating, please contact Dr. Faye Wachs by e-mail at email@example.com, for more information.
Update from Dr. Faye Wachs – December 2016
“Over the last year and a half, I have spoken with over 100 people with facial paralysis, doctors, physical and occupational therapists, parents and siblings of people with Moebius syndrome, and a number of social and psychological issues recur. Isolation, depression, and anxiety are endemic, and mental health treatment should be part of the standard of care. The resources available to improve function, improve appearance, and reduce pain, are often uncovered, unavailable, and/or unaffordable. Coping strategies and options vary by region, income, race and family background. Gender plays a role in willingness to discuss experiences, the magnitude of the capital lost, and support sought. For those with acquired facial paralysis, and many with congenital, identity is disrupted in ways that cause significant impact to the ability to enjoy presentation of self. In some cases, facial paralysis can qualify as a disability. Raising awareness and providing accommodations, treatment and support is imperative so that those with facial paralysis can have an improved quality of life.”
Dr. Wachs is still interviewing a limited number of persons, so please contact her at the email listed above if you would like to take part.
Research on Genetic Causes of Facial Paralysis
This study is being lead by Physician Scientist Dr. Bryn Webb, with the hope that her quest could provide more accurate diagnosis and, eventually, better treatment options for patients around the world.
To learn more about this research please click here.