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April 09, 2019; 92 (15 Supplement) May 8, 2019

PRO-ACE: Global Collaborative Ecosystem in a Post-PRO-ACT Era (P4.6-006)

Alexander Sherman, James Berry, Marc Gotkine, Jonathan Glass, Christian Lunetta, Mary Kay Floeter, Bryan Traynor, Igor Katsovskiy, Olga Kharakozova, Alex Korin, Amanda Podesta, Ervin Sinani, Natalia Tarasenko, Merit Cudkowicz
First published April 16, 2019,
Alexander Sherman
1Neurological Clinical Research Institute, Massachusetts General Hospital Boston MA United States
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James Berry
3Neurological Clinical Research Institute Boston MA United States
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Marc Gotkine
4Hadassa University Hospital Jerusalem Israel
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Jonathan Glass
5Emory University School of Medicine Atlanta GA United States
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Christian Lunetta
6CENTRO CLINICO NEMO Milan Italy
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Mary Kay Floeter
7National Institute of Neurological Disorders and Stroke Bethesda MD United States
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Bryan Traynor
8National Institute on Aging Bethesda MD United States
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Igor Katsovskiy
1Neurological Clinical Research Institute, Massachusetts General Hospital Boston MA United States
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Olga Kharakozova
1Neurological Clinical Research Institute, Massachusetts General Hospital Boston MA United States
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Alex Korin
1Neurological Clinical Research Institute, Massachusetts General Hospital Boston MA United States
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Amanda Podesta
1Neurological Clinical Research Institute, Massachusetts General Hospital Boston MA United States
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Ervin Sinani
1Neurological Clinical Research Institute, Massachusetts General Hospital Boston MA United States
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Natalia Tarasenko
1Neurological Clinical Research Institute, Massachusetts General Hospital Boston MA United States
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Merit Cudkowicz
2Massachusetts General Hospital Boston MA United States
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Citation
PRO-ACE: Global Collaborative Ecosystem in a Post-PRO-ACT Era (P4.6-006)
Alexander Sherman, James Berry, Marc Gotkine, Jonathan Glass, Christian Lunetta, Mary Kay Floeter, Bryan Traynor, Igor Katsovskiy, Olga Kharakozova, Alex Korin, Amanda Podesta, Ervin Sinani, Natalia Tarasenko, Merit Cudkowicz
Neurology Apr 2019, 92 (15 Supplement) P4.6-006;

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Abstract

Objective: PRO-ACT platform, a de-facto reference knowledgebase with 30+ published papers, several disease models and staging systems, contains clinical trials selection biased data.

Similar platform to collaboratively share observational datasets for global large-scale phenotyping, disease progression models development and validation, linking clinical data to bio-, image-banks, WGS files, and omics, and for identifying disease sub-populations is essential to bring ALS/MND into Age of Precision Medicine and Big Data

Background: Develop common approaches to PALS’ data harmonization, integration, de-identification, sharing and distribution, and incentives for Data Contributors by introducing The Pooled Resource Open-Access Clinical Research (PRO-ACE) platform to facilitates:

  • - Structured and secure integration of retrospective/prospective clinical/clinical research information

  • - Harmonization, de-identification, aggregation, storage and open-access data distribution for secondary analyses.

Design/Methods:

  • - Harmonized DUAs, CDEs, SOPs plus NeuroGUID technology lead to accelerated studies’ review, and deployment, while preserving PALS’ privacy

  • - Standardized ICF language facilitates information aggregation/sharing

  • - Data from ERB/IRB approved observational studies, retrospective clinical assessments, population registries and clinical datasets are eligible for inclusion

  • - NeuroBANK™, patient-centric prospective clinical research environment is one of many PRO-ACE feeder platforms

  • - Curated de-identified and harmonized datasets merged into PRO-ACE Dataset are available for:

    • - Ad-hoc online analyses with NeuroCHARTS™ technology

    • - Open-access distribution for secondary analyses

  • - Data Access Committee reviews access requests

  • - Data Contributors become PRO-ACE Consortium members with benefits ranging from first-access rights to new data to securing authorship to papers

Results: 2,500+ longitudinal PALS’ records from observational studies available for analyses with hundred being added monthly.

PRO-ACE platform:

  • - Allows aggregation of existing publicly- and privately-collected datasets from multiple sources including Natural History studies, retrospective clinical assessments and other existing clinical datasets, providing an invaluable open-access resource for accelerating discovery

  • - Is the first platform for global collaboration in a single disease, with data devoid of placebo effects and clinical trial selection bias, thus being ideal for disease modeling and predictive algorithms validation

  • - Sandbox for developing clinical research collaborations and sharing incentives

Disclosure: Dr. Sherman has nothing to disclose. Dr. Berry has nothing to disclose. Dr. Gotkine has nothing to disclose. Dr. Glass has nothing to disclose. Dr. Lunetta has nothing to disclose. Dr. Floeter has nothing to disclose. Dr. Traynor has nothing to disclose. Dr. Katsovskiy has nothing to disclose. Dr. Kharakozova has nothing to disclose. Dr. Korin has nothing to disclose. Dr. Podesta has nothing to disclose. Dr. Sinani has nothing to disclose. Dr. Tarasenko has nothing to disclose. Dr. Cudkowicz has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Cytokinetics, Eli Lilly & Company, Orion, Biohaven, and MT Pharma. Dr. Cudkowicz has received personal compensation in an editorial capacity for JAMA Neurology.

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