The Northeast ALS Consortium's intent is to foster collaboration both in the lab and clinic, and to allow members of the Consortium to share discoveries and potential therapies with other members.

NEALS supports the policies of the National Institutes of Health (NIH) that states, “Scientific research depends on the free flow of information and ideas. To ensure that future research can build of previous efforts and discoveries...Data should be made as widely and freely available as possible while safeguarding the privacy of participants, and protecting confidential and proprietary data.”

NEALS Data Sharing Policy

Below is an overview of the NEALS Data Sharing Policy. Members may access the complete policy on the members-only portal.

Type of Data to be Shared

All de-identified data from NEALS clinical studies will be made available to all members of the Consortium. This includes data generated during clinical trials or other types of clinical research studies that involve human research subjects.

As part of the NEALS mission to move research from the laboratory into clinical trials, we encourage members to share non-NEALS data (generated with funding outside of NEALS), to the extent possible under outside funding, internal institutional constraints and external collaborator policies.
 
Protection of Human Subjects and Privacy Issues

NEALS Consortium is in agreement with the NIH and their guidelines for protecting human subjects and their privacy. We agree to abide by the intent of the policy as it is stated, “The rights and privacy of human subjects who participate in NIH-sponsored research must be protected at all times. It is the responsibility of the investigators, their Institutional Review Board (IRB), and their institution to protect the rights of subjects and the confidentiality of the data. Prior to sharing, data should be redacted to strip all identifiers, and effective strategies should be adopted to minimize risks of unauthorized disclosure of personal identifiers.”

Before approving a data request, NEALS will confirm that the data from individual trials and/or studies that are shared by members, have been de-identified and will not reveal individual subject identifying information (names) and adhere to HIPAA Privacy Rule 5.

NEALS members will abide by the Institutional Review Board (IRB) regulations and requirements of their individual IRB as it pertains to data sharing.

To request data, please log on to the members-only portal, fill out a data request form and submit to:

Breen A. Power 
NEALS Program Manager
Massachusetts General Hospital East
Neurology Clinical Trials Unit
Building 149, Room 2274
13th Street
Charlestown, MA 02129
bpower@partners.org