Presentation/Paper Repository

Find links to PDF files of important research papers and recent presentations here.


Standard of Care

CCM Clinical Care Consensus Guidelines, published in Neurosurgery, April 2017

Overview of current state of the science

cavernous malformations: deconstructing a neurosurgical disease, a broad review of our current understanding of CCM science, published in the Journal of Neurosurgery, July 2019


Endothelial TLR4 and the microbiome drive cerebral cavernous malformations, published in Nature, January 2018. Original paper linking gut microbiome composition to CCM lesion development in mice.

Distinct cellular roles for PDCD10 define a gut-brain axis in cerebral cavernous malformation, published in Science Translational Medicine, November 2019.  Paper linking the integrity of gut mucous lining and dietary emulsifiers to CCM lesion development and aggressiveness.


Amy Akers, PhD

2019 Scientific Summary, 2019 US National Patient Conference

Kristen Dahlem, RN

Learnings from the Patient Registry, 2019 US National Patient Conference

Connie Lee, Psy.D.

Toward 2030, 2018 US National Patient Conference. An overview of progress in care with a vision toward a cure by 2030. Watch the presentation on YouTube.

Genealogy of the CCM2 Exon 2-10 Deletion Founder Mutation, Alliance to Cure Cavernous Malformation Scientific Meeting, November 2019.

Clinical Features of the CCM1 Common Hispanic Mutation, Baca Family Historical Project Meeting, December 2019.