Data submission, use, and access
The Amyotrophic Lateral Sclerosis Knowledge Portal will serve as the gateway to a large and growing aggregation of data relevant to the genetics of ALS, along with analyses, tools, and visualizations to interpret those data.
The Broad Institute will aggregate data, support analyses, and continue to update capabilities to disseminate results relevant to the genetics of ALS and related traits, while coordinating collaboration within the Portal.
Individual-level data will never be shared with ALSKP users. Individual-level data will reside in one or several data vaults behind a secure firewall. User-activated modules will be deployed behind the firewall to analyze the data or query precomputed results. The purpose of the ALSKP is to enable broad access to genetic information concerning ALS in a form that meets user needs while maintaining individual privacy requirements. ALSKP users are encouraged to provide feedback on the extent to which the ALSKP meets those goals.
Portal Access and Terms of Conduct
To access the ALSKP, users must obtain a Google ID, which will be used for quality control and monitoring purposes.
Data use and availability
All users are welcome to use results from analyses of these data to further their research without seeking explicit permission from the Portal team or funders.
Portal users are expected to abide by the following provisions on data use:
- Users will not attempt to download any dataset in bulk from the Portal
- Users will not attempt to identify or contact research participants
- Users will protect data confidentiality
- Users will not share any of the data with unauthorized users
- Users will report any inadvertent data release, security breach, or other data management incidents of which they become aware
- Users will abide by all applicable laws and regulations for handling genomic data
Agreeing to these provisions is a requirement of Portal use. Violating them may result in an NIH investigation and sanctions including revocation of access to the Portal.
Citing portal data
Users are welcome to cite the ALSKP in scientific publications. If users are citing a single dataset represented in the ALSKP, they should cite both the ALSKP and the relevant paper for that dataset.
Please use the following citation when referring to data accessed via this portal:
Amyotrophic Lateral Sclerosis Knowledge Portal. Year Month Date of access; URL of page you are citing. Also, please cite Farhan et al., Exome sequencing in amyotrophic lateral sclerosis implicates a novel gene, DNAJC7, encoding a heat-shock protein. Nature Neuroscience 2019.