International Journal Highlights Vital DLH Data Management Work
An article published in the International Journal for MS Care highlights the important role DLH plays in support of the sole, unified clinician-derived registry to examine Multiple Sclerosis across North America. DLH registry managers Sara McCurdy Murphy, BA, and Lisa Patton, BS, serve as co-authors of the article, titled “The North American Registry for Care and Research in Multiple Sclerosis (NARCRMS).”
“Social & Scientific Systems, a DLH Holdings Company, was selected as the [NARCRMS] operations center with information technology and data management services also provided,” the authors write. “Social & Scientific Systems facilitates the collection and sharing of NARCRMS data and provides support at both the site level, for the collection of physician generated data, and the patient level, or ensure uniform collection of [patient reported outcomes].”
Prior to the creation of the North American Registry for Care and Research in Multiple Sclerosis (NARCRMS) – a joint venture between the pharmaceutical industry and the Consortium of Multiple Sclerosis Centers (CMCS) – a single, clinician-derived registry to examine the disease as a group across the continent did not exist. This concerned researchers who worried that a fully accurate picture of the disease could not be obtained through individual regional registries alone.
Recruitment is expected to be completed soon, with nearly 1000 participants enrolled and 25+ centers participating across the United States and Canada. Data to be collected includes clinical status, health economic outcomes, magnetic resonance images, and biomarkers relevant to understanding relapses and progression.
The registry organizers hope to achieve a better understanding of the treatment and progression of MS in the intermediate term, with prevention of the disease remaining the ultimate goal.
The full article is available from the International Journal of MS Care.
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