HEADWAY Workshop Resources

NINDS Director’s Message - Making HEADWAY on Inequities in Neurological Health

The term “HEADWAY” means moving forward or making progress, especially when circumstances make things slow or difficult. When it comes to health equity in neurological disorders, never has a term more accurately described a process. In 2010, Dr. Story Landis—my predecessor as Director of NINDS—charged an advisory working group of NANDS Council to review the state of disparities research in neurological health and generate recommendations on how the Institute could make progress against such disparities. Now, a decade later these same neurological health disparities remain. Under the leadership of Dr. Richard Benson, the NINDS Office of Global Health and Health Disparities – in collaboration with other NINDS offices and staff – intends to expand and strengthen research efforts to design solutions that can make a difference for those neurohealth inequities.

Read the full message here:

NINDS Office of Global Health and Health Disparities

The Office of Global Health and Health Disparities (OGHHD) within the Division of Clinical Research, leads the coordination and development of programs and initiatives that foster global research and research on health disparities in neurological disorders and stroke.

NINDS Office of Programs to Enhance Neuroscience Diversity

The mission of the Office of Programs to Enhance Neuroscience Workforce Diversity (OPEN) is to represent NINDS at all levels of NIH in matters pertaining to NINDS workforce diversity.  OPEN develops and implements individual and institutional funding opportunities while working across the NINDS scientific portfolio to promote inclusion.

Mind Your Risks

Mind Your Risks® is a public health campaign that educates people with, or at risk of, high blood pressure about the importance of taking charge of their health. Controlling high blood pressure can help reduce the risk of having a stroke and developing dementia later in life.

NIH Health Equity Research

NIH is committed to:

Improving minority health and reducing health disparities.

Removing the barriers to advancing health disparities research.

NINDS Scientific Resources

NINDS Common Data Elements (CDEs)

The CDE Catalog is a directory of the available NINDS CDEs. Users can search the Catalog to isolate a subset of the CDEs (e.g., all stroke-specific CDEs, etc.), and to view and download details about the CDEs.  The NINDS strongly encourages researchers who receive funding from the Institute to ensure their data collection is compatible with these common data elements (CDEs).

The Federal Interagency Traumatic Brain Injury Research (FITBIR) Informatics System

The National Institutes of Health (NIH), in partnership with the Department of Defense (DoD), is building a secure, centralized informatics system (database) for traumatic brain injury (TBI) research. The FITBIR Informatics System is an extensible, scalable informatics platform for TBI relevant data (medical imaging, clinical assessment, environmental and behavioral history, etc.) and for all data types (text, numeric, image, time series, etc.). FITBIR was developed to share data across the entire TBI research field and to facilitate collaboration between laboratories, as well as interconnectivity with other informatics platforms.

The NINDS Biospecimen and Data Repository (BioSEND)

BioSEND is a biorepository operated by Indiana University with funding from NINDS. It currently banks a variety of biospecimens including DNA, plasma, serum, RNA, CSF, whole blood, and saliva from a number of clinical studies within the NINDS mission.

The NINDS Human Cell and Data Repository

The NINDS is committed to providing well characterized cell sources to both academic and industry investigators to advance the study of neurological disorders.  Cell sources currently include fibroblasts and/or induced pluripotent stem cells for Alzheimer’s Disease, Amyotrophic Lateral Sclerosis (ALS), Ataxia-telangiectasia, Frontotemporal Lobar Degeneration (FTD), Huntington’s Disease, Parkinson’s Disease, and healthy controls.  Cell sources, including isogenic cell lines for current and new diseases covered by the NINDS will be added over the next several years.  The NINDS Human Cell and Data Repository (NHCDR) provides new tools for analytics, searching and ordering for all components of the repository.

The NINDS Human Genetics Resource Center

The NINDS Human Genetics Resource Center banks samples from subjects with cerebrovascular disease, dystonia, epilepsy, motor neuron disease, Parkinsonism and Tourette Syndrome, as well as population controls.

NIH NeuroBioBank

The NIH-funded NeuroBioBank (NBB) was established in September 2013 as a national resource for investigators utilizing human post-mortem brain tissue and related biospecimens for their research to understand conditions of the nervous system.