National Fibromyalgia Association, RemedyMD partner to build fibromyalgia research registry

Aug 24 2010

The National Fibromyalgia Association has partnered with RemedyMD^® to provide a national database that will aggregate data from a wide variety of sources to provide a complete disease registry for fibromyalgia research. It offers new hope to sufferers since this will represent the first time that researchers have the opportunity to look at all data relevant to fibromyalgia in order to identify patterns which lead to more effective diagnosis and treatment.

“Registries: The Most Effective Way to Make Your EHR 'Meaningful'”

RemedyMD allows researchers and foundations to collect, aggregate, harmonize, and analyze data from disparate data types and sources, enabling researchers to see a 360º view of each patient or research subject, including:

• Electronic Health Records data
• Biospecimen Repositories
• Imaging Applications
• Clinical Applications
• Gene Panels
• Claims Data
• And more

In addition, the fibromyalgia-specific registry provides a patient specific portal that enables longitudinal outcome tracking.

"The National Fibromyalgia Association has recognized that it can dramatically accelerate clinical research by providing researchers and patients with an all-encompassing data set that is specific to fibromyalgia," adds Gary D. Kennedy, founder and chief executive officer of RemedyMD.

"This data becomes much more valuable when supplemented by tools and fibromyalgia applications that enable researchers to recognize patterns and take informed action as a result of the things they identify. RemedyMD also provides the data infrastructure that is used to ensure that data collected is harmonized in a way that is consistent and valid for all researchers."

According to Lynne Matallana, president and founder of the NFA, "RemedyMD is going to help the National Fibromyalgia Association advance fibromyalgia research around the world. And since the NFA will be the custodians of this data, it provides an opportunity to financially sustain the organization."

RemedyMD plans to announce additional registries for other diseases in the coming weeks and is hosting two upcoming free webinars: "Using Clinical Data to Accelerate Rare Disease Research" on Sept. 15^th and 28^th, and "Registries: The Most Effective Way to Make Your EHR 'Meaningful'" on Sept. 9^th.