Research opportunity and event information may be provided on behalf of an external organization. Please refer to the contact information within each listing to identify the contact for questions or comments.
Adverse Childhood Experiences and Pediatric Demyelinating Diseases Research Study
Children diagnosed with demyelinating diseases such as multiple sclerosis (MS), NMOSD, and MOGAD often face complex health challenges, and growing research suggests that early life stressors—known as Adverse Childhood Experiences (ACEs)—may influence their disease course and overall well-being. Despite this, the connection between ACEs and pediatric demyelinating diseases remains understudied. Researchers at the University of Arizona College of Medicine – Phoenix and UC Davis are conducting a national study to explore how childhood trauma, family adversity, and social factors may impact individuals diagnosed before age 18.
This anonymous survey is open to adults (18+) diagnosed with any of the conditions listed below in childhood, as well as parents or guardians of children affected with these conditions. The survey takes approximately 10 minutes to complete. Individuals who are not diagnosed with any of the conditions listed below are also able to take the survey as part of our control group (must be 18 years or older or a parent/guardian over the age of 18)!
The conditions being investigated include:
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Multiple Sclerosis (MS)
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Neuromyelitis Optica Spectrum Disorder (NMOSD)
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Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease (MOGAD)
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Acute Disseminated Encephalomyelitis (ADEM)
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Optic Neuritis
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Transverse Myelitis
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Radiologically Isolated Syndrome (RIS)
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Clinically Isolated Syndrome (CIS)
Below is the link to the ACEs Survey
Please note that some questions may address sensitive or distressing topics related to early life experiences. Participants are encouraged to skip any questions they are uncomfortable with and can stop the survey at any time. Support resources are provided within the survey.
If you have any questions, please contact Amara Miller at amaramiller@arizona.edu.
A new topic for the Our Questions Have Power program!
When it comes to MS symptoms and how to manage them, what questions are most important to you? What symptom-related topics do you wish researchers were studying? Your questions are valuable and we invite you to share them through the Our Questions Have Power program on the iConquerMS website.
The Our Questions Have Power program was launched in March 2021 with an initial focus on COVID-19. Questions submitted by iConquerMS members have helped shape the COVER-MS vaccination study and are being shared with the research community to guide other efforts.
We’re now extending Our Questions Have Power to include a second topic: MS symptoms and their management and treatment. As before, you’re invited to share questions on this topic that you think should be studied and to vote on questions submitted by other iConquerMS members. We’ll share these questions with people affected by MS, researchers, healthcare professionals, advocates, and funders – and, together, we’ll work to launch research studies to answer those questions.
It’s easy to share your ideas and input in Our Questions Have Power!
