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June 26, 2020

Award Center for Innovations and Bioinformatics wins Bio-IT World Innovative Practices Award in Translational Research

The SigNET Platform enables scientific collaboration, integration, analyses, and distribution of research data across studies and repositories. It generates Unique Clinical Research Identifiers (UCRIs) per Patient per Study per Disease, thus permitting collaboration and sharing in rare diseases, in which utilization of “standard” GUIDs may not be enough to protect identities of patients participating in multiple research projects. UCRIs allow aggregation and prevent duplication of patients’ records, enable integration/sharing of patient information originating in clinical/research silos, and allow automation of searches across multiple repositories. Such innovative approach and technology offer standardized, reliable, and secure way to collaborate across research continuum accelerating discoveries across academia, foundations, and the industry. Several pharma/biotech companies, government agencies, academic consortia, and disease foundations utilize SigNET in clinical trials/studies.

October 01, 2019

CIB at 18th Annual NEALS Meeting

The Center for Innovation and BioInformatics, at Massachusetts General Hospital, was represented at the 18th annual NEALS meeting in Clearwater, Florida. The team had 6 poster presentations, during the meeting.

 

Topics included:

- Risk of ALS among American Football Players

- Automated Data Transfer from EHR to NeuroBANK

- Culture Specific Data Display

- Extended Access Program Trails

- NeuroGUID-NeuroSTAmP Generator

- Optimization with the Universal Log Page

July 24, 2019

ALS Natural History Exceeds 1000 Patients!

As of today, 1002 patients have been consented and data entered on 903 patients for ALS Natural History! Thank you to everyone involved for their hard work and commitment that allowed us to achieve this milestone!

June 21, 2019

Alex Sherman representing the U.S. at the Clinical Research Initiative for Global Health General Assembly in Paris.

 

TOPIC: Rethinking Clinical Research from Rare Diseases to Precision Medicine.

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Publications

Miller, Timothy et al. "Defining SOD1 ALS natural history to guide therapeutic clinical trial design." J Neurol Neurosurg Psychiatry 2016 Jun 3.

Bedlack, Richard S. et al. “How Common Are ALS Plateaus and Reversals?” Neurology 86.9 (2016): 808–812. PMC. Web. 

 

Küffner, Robert et al. "Crowdsourced analysis of clinical trial data to predict amyotrophic lateral sclerosis progression" Nature Biotechnology 33 (2015): 51–57. 

Zach, Neta et al. “Being PRO-ACTive: What Can a Clinical Trial Database Reveal About ALS?” Neurotherapeutics 12.2 (2015): 417–423. PMC. Web.

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