Rare Disease Registries        

LIVE WEBINAR: "Using Clinical Data to Accelerate Rare Disease Research."

 

Thurs., March 4 - 4:00pm (EDT)
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Fri., March 12 - 12:00 noon (EDT)
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Frequently Asked Questions

 

Some of Our Registries:

       · Pediatric Interstitial Lung Disease
       · Pediatric Pulmonary Hypertension Disease
       · Von Willebrand Disease
       · Necrotizing Enterocolitis (NEC)
       · Hirshsprung's Disease
       · Congenital diaphragmatic hernia (CDH)
       · Exstrophy- Epispadias Complex
       · Prune-Belly Syndrome
       · Hydronephrosis
       · Urolithiasis

 

The Wait is Over!

As of Feb. 28, Rare Disease Day, RemedyMD is pleased to announce its new “RegistryOnDemand” solution exclusively for rare disease researchers. (Official Release)

RemedyMD’s new RegistryOnDemand addresses the unique needs of rare disease researchers. RemedyMD’s RegistryOnDemand provides access to disparate data types and sources, tools to collaborate with colleagues regardless of location, the ability to perform powerful queries and manipulate data without help from IT, and access to all of the tools, data infrastructure and applications you need.

RegistryOnDemand gives rare disease researchers

• Access to tools, data infrastructure, and applications they need
• For one low monthly subscription rate
• Including 8 hours of consulting
• Hosting and access to Oracle®
• Support and maintenance
• No expensive hardware to buy
• No long-term contracts
• And for the next 90 days, elimination of a $10,000 setup fee

Want to Learn More?

Attend a free 1-hour webinar titled: “Registries 2.0 – Using Clinical Data to Accelerate Rare Disease Research” to learn how we address the unique needs of rare disease researchers and how you can take advantage of our new RegistryOnDemand solution.

We are offering two sessions of this valuable webinar. Please register for the session that works best with your schedule:

Thursday, March 4th at 4:00pm (Eastern): Please click here
Friday, March 12th at 12:00 noon (Eastern): Please click here

 

RegistryOnDemand at a Glance

With RemedyMD’s RegistryOnDemand, you get Individualized, Immediate, and Inexpensive access to a comprehensive solution built exclusively for rare disease researchers. Discover the power of i³:

INDIVIDUALIZED
Pre-configured electronic data capture forms allow rare disease researchers to collect exactly the data the need and want. This includes: demographic, clinical, genetic, image data elements, survey results, and more. In addition, you can modify your forms to meet the evolving needs of your research, all without the help of IT personnel.

IMMEDIATE
RegistryOnDemand means that you can be up and running in days (not weeks or months). Because 95% of your rare disease registry is already contained in RemedyMD’s UniversalRegistry^TM, we can configure the last 5% that is specific to your research in a matter of hours.

INEXPENSIVE
Rare disease research is chronically underfunded. RemedyMD’s RegistryOnDemand gives you access to all of the tools, data infrastructure, and applications that you need to accelerate your rare disease research for a low monthly subscription fee. No long term contracts, no exorbitant upfront set up fee. That’s the power of i³!

Rare Disease Registries

RemedyMD's Rare Disease Registries allow researchers, foundations, or patients to collect, harmonize and analyze data from all sources. Our registries include disease-specific electronic data capture forms for clinical, biospecimen, and genetic information. Our rare disease registries are fully configurable so you can collect exactly the information you want without needing to wait for IT to define the screens and validation criteria that are specific to your research.

Rare diseases have their own set of challenges as it pertains to data collection and curation. Rare disease data is more difficult to collect and curate because:

• Rare diseases have limited numbers of patients from which a researcher can collect data
• There are few approved treatments for rare diseases so it is difficult to measure patient response to a hypothesis
• Many rare diseases are related to other rare diseases and researchers need the ability to conduct cross disease research
• Since there is a dearth of data for rare diseases each visit needs to be treated as a research visit in the sense that verifiable data is collected in a way that can be harmonized with other visits
• Collaboration is essential since very few researcher have a patient base large enough to generate statistically significant results

RemedyMD recognizes the challenges faced by rare disease researchers and has built our rare disease registries to specifically address these issues.

Technically Speaking:

RemedyMD’s Rare Disease Registries combine a data infrastructure, tools, and applications that dramatically accelerate the progress of rare disease research. Our rare disease registries:

• Accommodate all data types including images, gene expression data, and biosamples
• Collect encounter and other temporal data that is required for analysis
• Provide secure Web-based access from any location
• Include tools that demonstrably improve the efficiency of researchers
• One-of-a-kind ontology that ensures inter and intra study consistency
• Enable researchers to create their own cohorts and analyze the data without IT involvement
• Seamlessly accommodate on-the-fly changes to the registry structure or data being collected
• Utilize industry standards such as SnoMed, LOINC, RxNorm, etc
• Employ a data access layer that supports centralized, federated, and XML storage structures

How Can Registries Make My Rare Disease Research More Effective?

Enable real-time data collection and reporting from all sources

How? Our rare disease specific data collection forms and case report forms enable validated data collection at the point of decision. When your secondary data is loaded through our tools it is automatically harmonized by our ontology just like data entered at your computer.

Employ a modern toolset

Why? Researchers and clinicians are very well trained and expensive resources yet they spend much of their research energy trying to merge data, learn SQL, or convince IT to prioritize their needs. They deserve tools that are as advanced as their skills are. Tools that make it easy for researchers to create powerful reports with no assistance. Researchers should never need to know the location of the data or the underlying structure of the database to gain access to all the data they need. This powerful toolset also ensures that every researcher can collect and exchange harmonized data with every other researcher.

Minimize implementation cost and time

How? Because 95% of your Rare Disease Registry is contained in RemedyMD’s UniversalRegistry™, we can configure the last 5% that is specific to your research in a matter of days for a fraction of the cost of one-off development. We have created many of our rare disease registries in less than a week.

Manage patient outcomes effectively

How? Our Rare Disease Registries enable you to collect all the data you would in a traditional EMR and then go well beyond that with data that is specific to your particular research interest such as biospecimen data, genomic data, device data, and patient tracked longitudinal outcomes data. When you can simultaneously analyze data from a wide variety of clinical applications along with your own research data you can recognize patterns and make new discoveries faster and more efficiently than ever before.

For more details about the new RegistryOnDemand attend one of our informative live webinars to be held on:

Thursday, March 4th at 4:00pm (Eastern): Please click here
Friday, March 12th at 12:00 noon (Eastern): Please click here

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DOWNLOADS

Disease Registries Feature Focus Sheet: Learn more about RemedyMD's Disease Registires.

Registries: The Track to Better Healthcare. Healthcare Intelligence Network's white paper on using registries to improve patient care for chronic diseases.

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