The MED13L Foundation is partnering with Boston Children’s Hospital’s Rosamund Stone Zander Translational Neuroscience Center to launch the MIND Study (MED13L Syndrome Investigation of Natural History and Development)—a groundbreaking three-year research initiative.
This study will:
- Collect clinical and developmental data from children with a confirmed MED13L diagnosis
- Include in-person and virtual participation options
- Help establish clinical outcome measures to support future trials
- Provide expert interpretation of genetic results, including variants of uncertain significance (VUS)
💡 Up to 30 families will be enrolled (20 in person, 10 virtually) per year. Neurobehavioral assessments will also be conducted at family conferences and remotely.
If your child has a confirmed MED13L diagnosis and you’re interested in participating, please contact:
📧 Abigail Sveden (Clinical Research Coordinator)
📍 Boston Children’s Hospital
✉️ Abigail.Sveden@childrens.harvard.edu
- Ongoing Opportunity
