Improving care of children with Autoimmune Encephalitis

March 18, 2019

Boston Children’s Hospital would like your help in improving the care of children with Autoimmune Encephalitis.

Boston Children’s Hospital is conducting a research study to explore whether parents are using social media to learn about their child’s health condition, and how this may affect their child’s medical care. They are inviting you to complete a short, 10-minute anonymous survey about your use of social media.

The survey was developed in partnership with several parents of children with rheumatic illnesses. They later expanded it to children with AE as well. The goal of the survey is to meet our shared interest in providing support and improving the resources available to families. When you fill out the survey, please enter your child’s disease as “other” and then write-in “Autoimmune Encephalitis.”

The survey is anonymous.  Please do not include any identifiable information in any of the open responses; they aim to protect your privacy and confidentiality. Participation in this research project is voluntary and will not affect your child’s medical care.

The survey will take 10 minutes to complete and is sponsored by Childhood Arthritis and Rheumatology Research Alliance (CARRA). CARRA has a team focused solely on AE. It is being conducted in partnership with the Arthritis Foundation, CureJM Foundation, Lupus Foundation of America, AE Alliance, Scleroderma Foundation, CRMO Foundation, and the Autoinflammatory Alliance.

Click here to participate:  SocialMediaSurvey

Note: whenever this survey refers to ‘rheumatic condition’ it should be read as ‘Autoimmune Encephalitis’