RESEARCH STUDIES FOR MALAN SYNDROME
Principal investigator: Dr. Muhammad Zafar
Research Institution: Duke University School of Medicine
Research Study Title: Epilepsy in Malan Syndrome
Study ends: April 30, 2021
Who can participate? All individuals with a genetic diagnosis of Malan syndrome (NFIX gene variant) are encouraged to complete the survey (both international and domestic).
**If your child does not have epilepsy, it is important that you still participate; simply check that your child does not have epilepsy and complete the other sections of the survey on behavior, sleep, language and gross/fine motor development. All responses will be de-identified.
The information obtained from this study will be presented at an upcoming in-person/virtual Malan Syndrome Family Conference. The information will also be prepared for publication in a medical journal.
Please contact the Malan Syndrome Foundation at firstname.lastname@example.org to receive the link to the survey.
Principal investigator: Josh Goulding-Talbot
Research Institution: University of Leicester and University of Sheffield
Research Study Title: Anxiety and mood difficulties in genetic syndromes, and their potential correlates
Study ends: May 31, 2021
Who can participate? Parent/guardian of a child between the ages of 3 and 18 years with Malan syndrome (both international and domestic)
Anxiety can have a tremendous impact on people with Malan syndrome and their families. This study aims to learn more about the experience of anxiety and related feelings/behaviors.
Please contact Josh Goulding-Talbot at email@example.com to receive the link to the survey.