Explore opportunities for medical studies and trials focused on children with AVMs. Discover ongoing research initiatives that aim to advance our understanding of pediatric AVMs and improve treatment options.
We currently have two opportunities!
1. For children who had a stroke when they were born (I-AQUIRE):
Each year, an estimated 3400+ infants in the U.S. experience PAS and have a high likelihood of lifelong impairment in neuromotor and often cognitive functioning, resulting in a high cost burden for families, the healthcare system, and society. If I-ACQUIRE proves efficacious, then the field will have the critically needed Phase III confirmatory evidence and the specific clinical protocol needed to transform rehabilitation and improve clinical outcomes and quality of life for infants with PAS.
This is a multi-site trial comparing 2 dosages of a form of intensive pediatric rehabilitation known as Infant ACQUIRE (I-ACQUIRE) to Usual and Customary treatment (U&CT). I-ACQUIRE will be used to treat 8 – 36-month-old children with PAS in either 3 hours/day (Moderate Dose) or 6 hours/day (High Dose) for 5 days/week for 4 weeks. For each child, treatment goals are set with parents who also participate in daily home practice (about 45 minutes/day) with their child. I-ACQUIRE includes all of the core features of pediatric Constraint-Induced Movement Therapy (CIMT).
2. For children who had a stroke when they were 1 month old or older (TOPSS):
Transcranial Direct Current Stimulation, a form of brain stimulation, is being tested in conjunction with conventional occupational therapy for arm weakness.
Note: All families get free therapy with a licensed therapist and a small reimbursement to help cover travel expenses and lost work.
3. For children who have VOGMS (VOGM-GRSC):
Vein of Galen malformations (VOGMs) are serious brain vascular issues in children caused by incorrectly formed arteries and veins during development. These malformations can lead to life-threatening problems such as heart issues and brain damage. The VOGM Genetics Research Consortium (VOGM-GRC) has been established to study the genetic factors contributing to VOGM by collecting data from affected patients and families. Discovering the genetic underpinnings may enhance treatment decisions and pave the way for new therapeutic interventions for VOGM and related conditions.
Fore more information: VOGM-GRC via IPSO Kid Stroke Website
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