Cores

The Information Technology (IT) Core is supported by Social & Scientific Systems, Inc. (SSS) in Silver Spring, MD and was established in the second quarter of 2015. The IT Core developed and implemented the NARCRMS registry (database) and is responsible for maintenance of the database and server management.  The IT Core utilizes OpenClinica, which provides an electronic data capture application, a relational database, and cloud-based data storage for the NARCRMS network.  The IT Core also provides user support, web training, database maintenance, and quality assurance.

The NARCRMS registry and electronic data capture application is accessible to enrolling sites with proper login credentials via https://ms-registry.s-3.net.  For more information about the IT Core, or to contact the IT Core directly, please email ms-registryhelp@s-3.net.

The NARCRMS Clinical Core was established in the first quarter of 2015 and was led by Dr. Aaron Miller, Mount Sinai School of Medicine. The Clinical Core identified the clinical metrics used by NARCRMS for the longitudinal evaluation of MS patients. Members also developed appropriate instruments for measurement of cognition, impairment, and disability to establish predictive markers to measure progress and disability over time. The Clinical Core developed the NARCRMS case report forms (CRFs) and will continue to evaluate them over the coming years, as needed. For more information about the Clinical Core, please contact NARCRMSOps@s-3.com.

The NARCRMS Neuroimaging Core is supported by the University of British Columbia in collaboration with the NARCRMS IT Core at Social & Scientific Systems, Inc.  The Neuroimaging Core is developing standard operating procedures (SOPs), guidelines and quality assurance/quality control (QA/QC) standards for the collection of MRIs for NARCRMS.  The Neuroimaging Core is also working with the IT Core to develop processes for image capture and de-identification of protected health information (PHI) on MRIs. For more information about the Neuroimaging Core, please contact NARCRMSOps@s-3.com.

The Biomarker Core will guide the systematic collection and storage of bio specimens, as directed by the Steering Committee with input from all stakeholders.  The Biomarker Core will prioritize analysis to identify biomarkers of disease progression.  The types of biological samples to be considered for collection as part of the registry will most likely include serum/plasma; lymphocytes, DNA, RNA, microRNA; and cerebrospinal fluid.  The Biomarker Core will be housed at the University of Miami and will be launched in 2018. For more information about the Biomarker Core, please contact NARCRMSOps@s-3.com.

The Genetics Core will be comprised of principal investigators doing genetics research on MS.  The Genetics Core will collaborate with the International Multiple Sclerosis Genetics Consortium (IMSGC) (http://imsgenetics.org/) by providing samples collected through NARCRMS to the IMSGC Central Repository located at the Hussmann Institute of Human Genomics at the University of Miami.  The Genetics Core will be launched within the next two years.  For more information about the Genetics Core, please contact NARCRMSOps@s-3.com.

The Experimental Therapeutics Core will be comprised of Research Interest Groups (RIGs) from enrolling sites/centers to utilize NARCRMS data as it becomes available to address specific unanswered questions in the disorder; evaluate diagnostic criteria; and establish patterns of disease expression.  The Experimental Therapeutics Core will be launched in early to mid-2018.  For more information about the Experimental Therapeutics Core, please contact NARCRMSOps@s-3.com.

The Bioinformatics/Biostatistics Core will be comprised of a core group of statisticians who will provide statistical support for data mining and analysis of information generated from clinical, radiological, immunological, and genetics studies.  The Bioinformatics/Biostatistics Core will be launched in mid to late 2018.  For more information about the Bioinformatics/Biostatistics Core, please contact NARCRMSOps@s-3.com.

The Neuropathology and Brain Banking Core will create and guide banking facilities for MS patients who wish to donate well-preserved brain and spinal cord tissue for scientific endeavors.  The Neuropathology and Brain Banking Core will arrange ante-mortem processing of their tissue after death and contribute to the collection of well-preserved brain and spinal cord tissue post-mortem, with minimum degradation of proteins and nucleic acids. The Neuropathology and Brain Banking Core will be launched in mid to late 2018.  For more information about the Neuropathology and Brain Banking Core, please contact NARCRMSOps@s-3.com.

The Healthcare Economics Core was convened in 2016 and was charged with identifying information to be collected regarding disability, utilization of health care resources and employment.  The information will help stakeholders better understand whether the use of expensive therapies is worthwhile from an economic standpoint, what are the savings from fewer hospitalizations, less disability and longer employment spans, and decreased utility of other health care resources.  NARCRMS updated the case report forms (CRFs) based on recommendations from the Healthcare Economics Core and also convened the NARCRMS Healthcare Economics Outcomes Research (HEOR) Advisory Group (AG) a sub-committee of the IAB to continue to address health care economics. For more information about the Health Care Economics Core or the HEOR AG, please contact NARCRMSOps@s-3.com.

From an Ad-hoc committee this core has become a standing committee for the HEOR core.