Vein of Galen aneurysmal malformation (VGAM) is a rare but potentially life-threatening cerebral vascular malformation with an estimated incidence of 1 in 25,000. VGAM represents nearly 30% of all pediatric cerebrovascular malformations. Over the past three decades, endovascular treatment and highly specialized neonatal and pediatric intensive care management, in conjunction with a specific multidisciplinary approach, have converted VGAM into a potentially curable disease with markedly improved survival and clinical outcomes. Few centers worldwide regularly take care of patients with VGAM from fetal diagnosis to long-term follow-up and the current literature does not provide sufficient data to define several aspects of this complex condition. International collaboration, data sharing, multidisciplinary and key-experts discussion are mandatory to find appropriate answers to the challenges in the diagnosis and treatment of VGAM.
The scope of the project is to build a comprehensive scientific platform including all aspects of this complex condition, from basic science to clinical data collection and analysis, from new insights in clinical support and treatment strategies to outcome measures and follow-up. Several specialties are involved in the care of patients with VGAM, including Genetics, Perinatal Pathology and Medicine, Fetal and Pediatric Cardiology, Neurology, Neonatal and Pediatric Intensive Care, Interventional Radiology and Neuroradiology. It would be key to build a network of leading researchers in this field to describe the retrospective experience, to present the recent advances with the objective of building a prospective collaborative research network.
All researchers and clinicians involved in the care of newborns and children with VGAM are invited to participate. A range of articles can be considered including Original Research, Clinical Trial, Brief Research Report, Case Report, Hypothesis & Theory, Study Protocol, Systematic Review, Review, and Mini Review articles.
The editors envisage that the contributed articles will address specific topics including, but not limited to:
• Defining the genetic background of VGAM
• Embryonic considerations and anatomical features
• Prenatal assessment and prognostic factors
• Pathological features: from brain damage to lung and heart pathological changes secondary to AV shunt and overflow
• Neuroradiological aspects and identification of prognostic factors
• Interventional radiology: treatment challenges
• In utero VGAM treatment
• Intensive care management.
• Proposal of a new VGAM score to define and grade severity of neonatal heart failure and indication to treatment
• Intensive Care strategies for neonates with VGAM and severe heart failure
• Multidisciplinary long-term follow-up and outcomes (functional and quality of life)
• A challenging project: the VGAM International Registry.
Vein of Galen aneurysmal malformation (VGAM) is a rare but potentially life-threatening cerebral vascular malformation with an estimated incidence of 1 in 25,000. VGAM represents nearly 30% of all pediatric cerebrovascular malformations. Over the past three decades, endovascular treatment and highly specialized neonatal and pediatric intensive care management, in conjunction with a specific multidisciplinary approach, have converted VGAM into a potentially curable disease with markedly improved survival and clinical outcomes. Few centers worldwide regularly take care of patients with VGAM from fetal diagnosis to long-term follow-up and the current literature does not provide sufficient data to define several aspects of this complex condition. International collaboration, data sharing, multidisciplinary and key-experts discussion are mandatory to find appropriate answers to the challenges in the diagnosis and treatment of VGAM.
The scope of the project is to build a comprehensive scientific platform including all aspects of this complex condition, from basic science to clinical data collection and analysis, from new insights in clinical support and treatment strategies to outcome measures and follow-up. Several specialties are involved in the care of patients with VGAM, including Genetics, Perinatal Pathology and Medicine, Fetal and Pediatric Cardiology, Neurology, Neonatal and Pediatric Intensive Care, Interventional Radiology and Neuroradiology. It would be key to build a network of leading researchers in this field to describe the retrospective experience, to present the recent advances with the objective of building a prospective collaborative research network.
All researchers and clinicians involved in the care of newborns and children with VGAM are invited to participate. A range of articles can be considered including Original Research, Clinical Trial, Brief Research Report, Case Report, Hypothesis & Theory, Study Protocol, Systematic Review, Review, and Mini Review articles.
The editors envisage that the contributed articles will address specific topics including, but not limited to:
• Defining the genetic background of VGAM
• Embryonic considerations and anatomical features
• Prenatal assessment and prognostic factors
• Pathological features: from brain damage to lung and heart pathological changes secondary to AV shunt and overflow
• Neuroradiological aspects and identification of prognostic factors
• Interventional radiology: treatment challenges
• In utero VGAM treatment
• Intensive care management.
• Proposal of a new VGAM score to define and grade severity of neonatal heart failure and indication to treatment
• Intensive Care strategies for neonates with VGAM and severe heart failure
• Multidisciplinary long-term follow-up and outcomes (functional and quality of life)
• A challenging project: the VGAM International Registry.