ANNOUNCEMENT: INFANT STUDIES OF AUTISM IN TSC There are two ongoing studies for infants with TSC: Study #1 is for infants ages 3-9 months and Study #2 is for newborns up to age 3 years. Study #1: Early Biomarkers of Autism in Infants with Tuberous Sclerosis Complex (TSC) Where: TSC Clinical Research Consortium sites at Boston Children’s Hospital, Cincinnati Children’s Hospital, University of Alabama at Birmingham, University of California at Los Angeles, University of Texas at Houston Principal Investigators: Mustafa Sahin, MD, PhD (Boston), Darcy Krueger, MD, PhD (Cincinnati), Martina Bebin, MD (Birmingham), Joyce Wu, MD (Los Angeles), Hope Northrup, MD (Houston) We are enrolling 3-9 month old infants with a diagnosis of tuberous sclerosis complex (TSC) for a new study on early markers of autism. The goal of this project is to use behavioral testing, MRI and EEG techniques to identify children at risk for developing autism starting at 3 months of age and continuing until 36 months of age. Who is eligible to participate? Infants diagnosed with TSC will be eligible to participate in this study if they are between the ages of 3 and 9 months of age (under 10 months). What will we do? If you agree to participate, the research team will obtain your informed consent. The study involves up to seven visits to a study site over a three year time period. The study visits will include behavioral testing, MRIs and EEGs. Parents will be with their child at all times. Cost/time commitment Study visits will vary in length based on your child’s age, but generally be a few hours in time. There is no fee to participate in this study. A voucher for parking and meals will be provided to you at each study visit. Travel funding may be available. Results Summary scores of your child’s behavioral testing, MRI and EEG results will be provided to you. Every step of the way, if new results from the testing are concerning, we will notify you and assist you in obtaining referrals or interventions, if you choose. After all study data has been analyzed, we will inform families of the overall results. Contacts If you are interested in learning more about this study, please send an email to info@tscstudy or visit tscstudy for contact information at each study site. Study #2: Early Screening for Autism in Tuberous Sclerosis Complex (TSC) UCLA and Boston Childrens Hospital are seeking volunteers to participate in their research study, read below for more information: We are currently conducting a study at University of California, Los Angeles (UCLA) and Boston Children’s Hospital for children diagnosed with Tuberous Sclerosis Complex (TSC) 0 months old and up to 3 years of age. The main goal of this research project is to look for early signs of autism in children with TSC. Up to 60% of children with TSC develop autism, but the diagnosis typically is not made until much later in childhood. Early detection leads to earlier interventions and, hopefully, better behavioral outcomes. We hope that the knowledge gained from this investigation will ultimately lead to earlier diagnosis of autism in infants with and without TSC. We hope to follow each infant for a few visits at either at University of California, Los Angeles or Boston Children’s Hospital over his or her first 3 years of life. Scheduling of these visits is very flexible and based on your needs. Study visits include behavioral measures, event-related potentials (ERPs), a neurological exam, and EEG. A subset of these measures is conducted at each visit. There is no fee to participate in this study. Families will be compensated for their time, and travel and parking can be compensated. Children will also receive a small toy at the end of each visit to the lab. If during the testing, we detect any abnormalities that may warrant further interventions, you will be notified. After all data has been analyzed, families will be informed of the overall results of the study. Enrollment in this research study has begun at both sites. Interested out-of-state families are welcome to participate at either the Los Angeles or Boston site, and compensation may be available for travel costs. If you are interested in participating in this study at either Boston or UCLA, please send an email to tsc.development.study@gmail or call 617-678-7348. They will reimburse all travel costs (up to 2 flights) as well as hotel, rental car and also provide funds for meals.
Posted on: Mon, 03 Nov 2014 13:07:43 +0000
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