Participate in a Study

The following studies are currently recruiting participants!

RASopathies Study: Currently recruiting participants with KRAS mutations

Children, adolescents and adults with mutations in the KRAS gene are invited to participate in a research study!

The purpose of this study, titled “Clinical and Neuropsychological Phenotype in individuals with RASopathies” is to understand how specific gene mutations in individuals with RASopathies (e.g., Noonan syndrome, neurofibromatosis type 1, Costello syndrome, CFC syndrome, etc.) is related to cognitive and behavioral development.

Study participants will be asked to participate in neuropsychological testing activities such as solving problems, answering questions, drawing, and recalling information from memory. Additionally, questionnaire forms will be completed by both the individual and a family member who knows them well (e.g., a parent). Families will also be asked to sign a release of information form so that the researchers can request records to confirm the child’s diagnosis of a RASopathy as well as genetic testing related to that diagnosis. Participants will also undergo a brief physical exam and interview with a geneticist to ask about medical history and any current medical concerns.

Participants will receive a $20 gift card for Amazon or Target for participating in this research.

There may be many opportunities to participate at an upcoming family meeting or at our site at the University of Minnesota. Please contact us for more information!

The study is being conducted by Dr. Rene Pierpont, Dr. Rebekah Hudock, and Dr. Mary Ella Pierpont at the University of Minnesota.

Contact:

Dr. Rene Pierpont

University of Minnesota Medical Center

Email: pier0053@umn.edu

Brain WAVES Study recruiting boys with cerebral adrenoleukodystrophy

See study flyer for details.