Tuberous Sclerosis Aggression and Self-Injurious Behavior Survey
Tuberous Sclerosis Complex has a wide range of symptoms that may appear differently in each individual. As a result there are many physical, behavioral and mental changes that can occur as a child with Tuberous Sclerosis ages. This survey is intended to assist our researchers in understanding the types of aggressive and self-injurious behaviors some individuals with Tuberous Sclerosis demonstrate and how frequently these behaviors occur. Because there is little understood about disruptive behaviors in TSC, we are asking for parents/guardians to provide us with information about disruptive behaviors in individuals with TSC.
Data will be used to create a limited dataset free of patient identifying information for research purposes that may contribute to an enhanced understanding of the types of behavioral problems demonstrated by individuals with Tuberous Sclerosis. Some of the following questions may be difficult to answer and you may choose to skip any questions you feel uncomfortable answering. You may also choose to end the survey at any time.
Your completion of this survey or questionnaire will serve as your consent to be in this research study.
Study contact Information:
Principal Investigator: Tanjala Gipson JHM-IRB Study Number: NA_00076476 For more information regarding this study, please call 443-923-9400 or toll-free at 888-554-2080 or by email at TSClinic@kennedykrieger.org