Skip to main content

Research Opportunity for Parents

This is an excellent opportunity for a parent to be a partner on a research project. The Principle Investigator is looking for two very specific parents to partner on the study and we are hoping you can help us find them.

1.      A parent whose child has experienced migraines AND has used the Emergency Department as a result of those migraines.

2.      A parent of a child who had COVID and as a result experienced multisystem inflammatory syndrome (MIS-C).

This is a new research project that is seeking family partners interested in helping to develop an interview guide and probing questions, as well as help determine the most important outcomes to patients and families when asking the question “How well do children with MIS-C and migraines do when cared for using an existing clinical protocol vs. not using a protocol?” In other words, there is a “pathway” that specifies how to treat these problems in a certain order, but sometimes clinicians don’t follow it but rather develop their own plan. This study will look at if there is a difference in the outcomes, and also how parents feel about the “pathway” vs. no path.

As an active member of the research team, parent partners will attend meetings twice monthly to develop the interview questions and develop outcomes. Family partners will also assist in the data analysis and manuscript writing on this project. Additionally, you will be expected to complete a one time online training on partnering in research that will take approximately 3-4 hours.

Time expected is 2-3 hours per month and a stipend of $25/hour will be paid for your time. Those interested can reach out to

Popular posts from this blog

LifeCourse Ambassador Series opportunity for families of individuals with intellectual and developmental disabilities

The Bureau of Developmental Disabilities Services and the Bureau of Quality Improvement Services believe that a true person-centered system measures a service or program by its ability to achieve quality, person-centered outcomes for the individuals being supported. We also recognize that family members of individuals with intellectual and developmental disabilities play a key role in helping them achieve their good life by facilitating choice, control and integration. To better support implementation of person-centered principles in service delivery, BQIS and BDDS, in partnership with The University of Missouri–Kansas City, is offering two separate family leaders Charting the LifeCourse ambassador for family members of individuals with I/DD. What is an Ambassador Series?  All Charting the LifeCourse Ambassador Series are designed to provide training, professional development, and implementation coaching to support individuals in achieving their good life and navigating services/suppor

Autism Awareness Month: You Are Not Alone

My son, Joshua, received his diagnosis of autism at the tender age of 2 years old. In retrospect, my husband and I can look back and see that there were red flags present, even when Joshua was an infant. The first thing we noticed was that Joshua was never interested in eye contact or looking at people's faces. It seemed that he was always looking past or through us. Neither my husband nor I said anything to each other at that point in time, but we couldn't help but notice it and think about what it may have meant. Over the months that followed, we slowly started to see the pieces of the puzzle come into focus. We were finally able to start putting the pieces together- bit by bit. Joshua had the benefit of beginning state early intervention services before his first birthday. Through the recommendations of our First Steps therapists and our pediatrician, we were able to get Joshua in to see a developmental pediatrician for further evaluation. Navigating through the evaluation a

AAHD Webinar: COVID SEP - How is it different?

Join the American Association on Health & Disability (AAHD) for a webinar on March 24, 2021 at 2:00 PM ET entitled “ COVID SEP - How is it different? ”. This webinar will address how the COVID Special Enrollment Period (SEP) is different from usual SEPs. It will explore the specifics of how the COVID SEP works and will also look at what people with disabilities need to consider when selecting a health insurance plan. Details are below: Title:  COVID SEP - How is it different? Date: March 24, 2021 Time: 2:00 PM ET Registration Link: webinar/register/WN_Wxx- 3KRkQnmJWHttc1uHcg