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This is a web-based resource that aggregates, secures, and stores deidentified patient information from 12 different registries for rare diseases (5,277 patients with 178 different rare dieseases) all in one place. This platform allows for the wider...

Co-PI ($1.2M) Total $1.6M (PI: Megan O'Boyle from PMSF) Phelan McDermid Syndrome Data Network (PMS_DN): A PCORI Patient Powered Research Network The PMS_DN mission is to advance knowledge, care, and treatment of Phelan-McDermid Syndrome (PMS), and related...

NIH P50 MH106933 Co-Investigator (PI: Isaac Kohane) As a result of the accelerated pace of development of technologies for characterizing the human genome, the rate-limiting step for large scale genomic investigation in clinical populations is now...

Amazon Web Services Research Grant EDU_R_FY2016 PI $55K To handle increasing data volumes and potential new sources of data, and to promote patient engagement, we intend to conduct a pilot study that involves hosting this infrastructure on a paradigm...

Amazon Web Services Research Grant EDU_R_FY2015_Q2_HarvardMedicalSchool_Avillach-NEW PI $100K To handle increasing data volumes and potential new sources of data, and to promote patient engagement, we intend to conduct a pilot study that involves hosting...

NIH/NCATS Co-PI Total $2.4M (PI: Isaac Kohane) The integration of clinical and biomedical data hosted in multiple distributed repositories is confonted by two significant challenges: 1) correctly linking information pertaining to the same patient across...

NIH/NCATS Co-PI. Total:$ 2.4 M. PI: Isaac Kohane The integration of clinical and biomedical data hosted in multiple distributed repositories is confronted by two significant challenges: i) correctly linking information pertaining to the same patient...

Co-PI ($624K) Total $950K (PI Megan O'Boyle from PMSF ) PCORI - PPRN http://www.pcori.org/research-results/2013/phelan-mcdermid-syndrome-dat… The PMS_DN mission is to advance knowledge, care, and treatment of Phelan-McDermid Syndrome (PMS) and...