BLT Day Meeting – June 9, 2023: Advancing Collaboration in Rare Pediatric Neurovascular Research
- BLT : Rare Disease Consortium
- Jun 29, 2023
- 2 min read
On Friday, June 9, 2023, the BLT Consortium gathered at the CSIC Conference Room, Boston Children’s Hospital, for a full day of presentations, discussions, and collaborative planning focused on rare pediatric neurovascular conditions, including Cerebral Proliferative Angiopathy (CPA) and Arteriovenous Malformations (AVMs). The meeting brought together experts from Boston Children’s Hospital (BCH), SickKids (Toronto), and Great Ormond Street Hospital (GOSH, London) — reinforcing BLT’s mission of international collaboration to improve outcomes for children worldwide.

Morning Session: Case Presentations & Molecular Pathways
The day began with a warm welcome and introductions, followed by scientific insights into vessel development:
Dr. Joyce Bischoff presented on targets along a molecular pathway in vessel development, offering new perspectives for future research.
Clinical case discussions were then shared across institutions (BCH, SickKids, GOSH), highlighting real-world challenges in CPA and AVM diagnosis and treatment.
Afternoon Session: Defining Features & Standards in CPA
The focus turned toward defining and standardizing approaches to Cerebral Proliferative Angiopathy (CPA):
Dr. Samyami Chowdhury proposed key clinical defining features of CPA.
Dr. Alfred Pokmeng See presented proposed imaging defining features.
Dr. Jeff Stout discussed standards in imaging techniques to ensure consistent evaluation across centers.
Following a short break, additional talks included:
Dr. Dulanka Silva on reporting surgical treatments.
Dr. Prakash Muthusami on reporting interventional procedures.
Dr. Laura Lehman on clinical outcome metrics.
Julie Meadows on reviewing collaborator roles within BLT studies.
Research Updates & Open Forum
The later session centered on ongoing research efforts and shared platforms:
Dr. Alfred Pokmeng See and Julie Meadows demonstrated the core lab imaging review interface and RedCap interface, tools designed to streamline data collection and review.
Dr. Laura Lehman presented the CAMP Study, advancing clinical research into rare neurovascular outcomes.
Dr. Christine Mrakotsky highlighted research on neuropsychological development and outcomes for affected children.
The session concluded with an open forum, inviting all collaborators to share ideas for future directions of investigation.
Wrap-Up & Collaboration Beyond the Meeting
The day concluded at 4:30 PM, followed by a networking dinner at Legal Seafood, allowing participants to continue discussions and strengthen collaborations in an informal setting.
Key Takeaways
Defining and standardizing features of CPA is a critical step forward.
Collaborative imaging platforms like RedCap will play an essential role in harmonizing data collection.
Research into neuropsychological outcomes continues to highlight the importance of long-term, holistic care.



