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

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.

•  - 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

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