Center for Innovation and Bioinformatics (CIB) at Massachusetts General Hospital’s Neurological Clinical Research Institute maintains a secure research database of anonymized data from research studies of amyotrophic lateral sclerosis (ALS) and motor neuron disease (MND).
To request the data, please fill out the Research Proposal Form. The Research Proposal Form requires a brief description and scientific justification for the use of requested data. The CIB Committee reviews and approves Research Proposals. Data Requestors can expect a response from the committee within 7 days after submission of Research Proposal.
Protection of Human Subjects and Privacy Issues:
Before approving a data request, CIB will confirm that the data from individual trials and/or studies that are shared will not reveal individual subject identifying information and adhere to HIPAA Privacy Rule 5.
All data requests will require an execution of a Data Sharing Agreement (DSA) with Massachusetts General Hospital.