The interest for the University of Wisconsin–Madison study on Healthcare Experiences with Moebius syndrome has been phenomenal, but we are in need of a few more voices. The study is currently seeking participants from the following groups:
- Adults with Moebius syndrome ages 18-30
- Adults with Moebius syndrome ages 65+
- Adults with Moebius syndrome and parents of children with Moebius syndrome who identify with one of the following groups: Black or African American, Indigenous, Asian American, Latino (*In order to participate in an interview, parents must have a child with Moebius syndrome under the age of 18.)
Share your story and help improve healthcare for the Moebius Community! Researchers at the University of Wisconsin–Madison are conducting a study to better understand the healthcare experiences of people with Moebius syndrome.
Interviews are conducted over Zoom and typically last 60 to 90 minutes.
If you’re interested in participating, please fill out this short interest form.
Questions? Contact research coordinator Kelly Novak at healthexperiences@med.wisc.edu or call/text 608-263-3810.
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Flyer image description: Are you an adult or a parent of a child living with Moebius syndrome? Sharing your story can help others.
About the study: The project’s goal is to understand the experiences of people living with Moebius syndrome are having with healthcare and identify creative approaches to improve care and support. Our team at the University of Wisconsin-Madison is interviewing people over the age of 18 with Moebius syndrome and parents of children with Moebius syndrome to learn from their insights and expertise.
We are currently seeking participants who identify with one of the following groups:
- Black or African American
- Indigenous
- Asian American
- Latino/a
- Under the age of 30 or over the age of 35
At a glance: The interview is virtual and lasts 60 to 90 minutes. We will schedule a time that is most convenient for you. You will receive $100 to thank you for your time and contribution. Questions? Reach out to us at 608-263-3810 or healthexperiences@med.wisc.edu.
About our team: We are the Qualitative and Health Experiences Research Lab located at UW-Madison. We learn about experiences with health and health care from people and families and use that learning to make systems work better for them. This study is funded through the Moebius Syndrome Foundation. Learn more about our team at: https://www.fammed.wisc.edu/qher/
If you are interested in participating, please scan the QR code to fill out a brief survey.
The top of the image contains the logos for the School of Medicine and Public Health, University of Wisconsin – Madison, and Q-HER Lab Qualitative and Health Experiences Research Lab.
