NARCRMS was established, in part, by generous participation and funding from Industry and by the Consortium of Multiple Sclerosis Centers. NARCRMS provides our industry supporters with information to help formulate sound product development plans for continuing research into the diagnosis, treatment, and potential eradication of MS. The longitudinal database will help identify patients for recruitment into clinical trials, making studies smaller, cheaper, and more effective. Additional benefits for NARCRMS Industry Supporters are outlined below.
Industry supporters of NARCRMS have membership on the NARCRMS Industry Advisory Board (IAB), which helped guide the development and will continue to assist with the expansion of NARCRMS. The IAB is comprised of one clinical expert from each pharmaceutical/biotechnology company providing support for NARCRMS. The IAB members provide suggestions to the Steering Committee and Leadership related to the tests, assessments, and other information collected via the NARCRMS database. The IAB will also continue to provide feedback on the plans for data collection and statistical analyses of interest and will participate in the planning of retrospective studies based on that data. The IAB meets quarterly, by either teleconference or in-person.
Industry supporters of NARCRMS also have membership on the NARCRMS Healthcare Economics and Outcomes Research (HEOR) Advisory Group (AG). The HEOR AG is a sub-committee of the IAB and made recommendations about 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 HEOR AG.
Industry supporters of NARCRMS will also receive access to all de-identified data via the NARCRMS reporting site. The reporting tool will provide an overview of patient statistics and quick links to available reports. In addition, Industry supporters will be able to explore the cohort via a dynamic tool that provides information about demographics and co-morbidity. The reporting tool will also provide access to charts, targeted reports and raw data for download. Overall, Industry supporters will be able to utilize NARCRMS to formulate sound product development plans for continuing research into the diagnosis, treatment and potential eradication of MS.