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Latest News

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.

June 03, 2019

Looking Back - ALS/MND International Natural History Consortium

The Natural History Consortium meeting was held in Boston over the weekend. Over 40 participants from study sites, industry and non-profit organizations were in attendance. The meeting touched on many topics, including Regulatory Landscape for Natural History studies and included a lively panel discussion regarding industry expectations of Natural History studies. 

Thanks to all who participated.

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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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