June 26, 2020

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

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

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

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. 

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Thanks to all who participated.

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May 22, 2019

We have climbed yet another summit in NeuroBANK with FIVE THOUSAND PLUS patients enrolled!

May 31, 2019

The meeting will consist of current consortium members and will include representatives from industry, government and academia. The focus will be on consortium infrastructure, solicitation of feedback and consensus on issues critical to the ongoing success and goals of the consortium.

May 15, 2019

Alex Sherman is presenting poster #2065: "Date of Onset as an Indicator and Predictor of Data Quality in Clinical Research" at the ENCALS Annual Meeting on Wednesday May 15th, 2019 during poster session 1 from 17.30-19.00.

May 08, 2019

Alex Sherman is presenting a poster 'PRO-ACE: Global Collaborative Ecosystem in a Post-PRO-ACT Era' (poster session: P4.6-006) during the AAN 2019 Annual Meeting on May 8th, 2019 from 11:30am to 6:30pm

May 05, 2019

At the American Academy of Neurology Conference in Philadelphia, Dr. Ghazala Hayat, from St. Louis University, will be presenting the General Characteristics of edaravone Use in the Natural History of ALS and Other Motor Neuron Disorders Consortium Dataset. The session number is S5.006 and will be at 1:55 PM.

June 06, 2018

The ALS Association (ALSA) writes about Center for Innovation and Bioinformatics (CIB)'s NeuroBANK™ winning 2018 Bio-IT World Award.

May 18, 2018

Massachusetts General Hospital Research Institute writes about Center for Innovation and Bioinformatics (CIB)'s NeuroBANK™ winning Bio-IT World‘s Best Practice award in the Personalized & Translational Medicine category.

May 17, 2018

Bio-IT World announced  (CIB) as the winner of the 2018 Best Practices Awards for Personalized & Translational Medicine

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April 20, 2018

Bio-IT World announced that the NeuroBANK™ platform was selected as a finalist for their 2018 Best Practices Award.

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March 08, 2018

The CIB team flew to Baltimore to take part in the Answer ALS Annual Symposium

December 08, 2017

The CIB team attended the 28th Annual International ALS/MND Symposium in Boston, MA. Our team and our collaborators used data from NeuroBANK™ or PRO-ACT for many platform and poster presentations.

October 04, 2017

The CIB team presented 6 BIG Data related posters and held the Big Data Committee Meeting at the 16th NEALS Annual Meeting in Clearwater, FL.

April 25, 2017

The first NeuroBANK™ user group meeting was held during the AAN 2017 Annual Meeting. We welcomed new and experienced users alike to share their experiences and contribute their knowledge and expertise to advance the field of BIG Data in neurological diseases. Help us define the future of BIG Data in neurological diseases!

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Agenda topics included:

• Who Owns Data in NeuroBANK™?

• What Does It Cost to Run a NeuroBANK™ Study?

• How to Start a NeuroBANK™ Project in a Week

• How to Get Data from NeuroBANK™

December 05, 2016

The NeuroBANK™ team traveled to Dublin, Ireland to attend the 27th Annual International ALS/MND Symposium. Our team and our collaborators used data from NeuroBANK™ or PRO-ACT for many platform and poster presentations.