Freezerworks Provides Rapid Implementation for Nation’s First Rare Tumor Center

Freezerworks Provides Rapid Implementation for Nation’s First Rare Tumor Center

Mountlake Terrace, WA – December 11, 2014 – The Rare Tumor Center of the Institute for Translational Oncology Research (ITOR) of the Greenville Health System of South Carolina is the nation’s first center dedicated exclusively to the research and treatment of rare cancers. With its innovation zone attracting promising new therapeutic biotech companies, ITOR is poised to make South Carolina a vital destination for integrative approaches to fighting cancer.  As with most, if not all health centers, a strong biorepository is a bridge to success in facilitating progress in both treatment and research. Managing the information behind each specimen stored is the biorepository information management system Freezerworks Unlimited (Dataworks Development, Inc., Mountlake Terrace, WA)

“To be an international destination center that develops and delivers innovative, personalized cancer therapies”

The above is the vision statement of ITOR. To meet that vision, the institute requires a biorepository that works closely with both clinical and research departments. A biorepository may have valuable samples, perhaps the most valuable collection of rare and hard to acquire samples in the world.  However, unless they are properly and fully annotated, those samples cannot be used to their maximum potential. An annotated, searchable, powerful database can provide rapid, invaluable molecular data for research and therapeutic uses.

According to ITOR Medical Director W. Jeff Edenfield, MD, the biorepository samples and data will serve as a valuable asset to the institute, and in particular the Rare Tumor Center. Utilizing its Freezerworks database to store and access data on both samples and patients, the biorepository is a vital link helping to match its patients to the most promising clinical trials available to treat their condition.  

ITOR Medical Director W. Jeff Edenfield, MD

“Patients at the Rare Tumor Center have, by design, higher level molecular annotation associated with them,” Edenfield explained. “We’re looking for therapeutic options for them, and Freezerworks makes it pretty easy to keep track of that molecular information because it becomes paired with the specimen, as well as with our clinical annotation regarding how they’re doing, and it’s linked to an actual specimen.”

The key is data management.  As cancer patients at Greenville come for treatment, they have the opportunity to gift their excess tissue samples for research.  Samples of blood and tissue are collected and processed in a timely manner. But the data behind those samples offer the clues to pathways to effective treatment.

 Behind every sample taken and stored are the following:

·         Demographic information on the patient

·         Information on the broad or narrow granting of consent, for both this and any possible samples taken in the future

·         Tracking of all tissue and blood samples at first operating appointment, including amount of each aliquot type, and freezer location

·         Ischemia and other important time points recorded to ensure specimen quality

·         Tests and test results

·         Data on post-surgical treatment – radiation and/or chemotherapy

·         Data on patient follow up: including the efficacy of treatment, and whether additional procedures are necessary. If additional tissue samples are taken due to further treatment, these can be traced back to the original tissue and procedure. 

·         Genomic biomarker information  

 

The ITOR Biorepository Information Management System: Freezerworks

ITOR uses the biorepository information management program to fully and accurately document each patient’s treatment program and associated tissues, from surgery to treatment to follow up visits to additional surgery (if needed). In doing so, the biorepository serves as a library for tissue samples.  Every library needs a good cataloguing system, so that the right samples are located for the right researcher. Like a library book, each specimen stored tells a story.

According to Clinical Research Nurse Lorie Allen, telling a story regarding the patient behind each tissue sample collected is what Freezerworks does.

Lorie Allen and Lauren Baber of the ITOR Biorepository, located in the Greenville Health System, Greenville, South Carolina

 

“We get a picture of what’s going on with the patient and the disease. What we are doing with data collection is painting a picture, for months at a time, and with the presentation of the data, it is actually telling a story of what’s going on,” Allen explained.

The story, however, is difficult to follow if passages are disjointed and not unified. ITOR needed to find a way to collect and present the necessary patient data being gathered from four different systems.  Because its original software system did not allow for the regular reporting that would allow for the ITOR staff directors to know at all times both the size and breadth of their collection, the Biorepository set about in 2013 to locate a replacement.  The task force looked at a number of options, and decided to purchase and install Freezerworks Unlimited.

With Freezerworks, more than 1,500 data fields track and link each sample to its donor, through a series of organized data entry and viewing screens that are easily accessed across the top of the screen. 

Specimen and patient information is easily accessed through a series of Clinical Annotation pages, with tabs running across the top of the program. Above, the details for each chemotherapy course are tracked.

A rapid implementation schedule:  fully operational within four months of purchase

Despite the large number of fields, the configurable nature of Freezerworks allowed for rapid development.  ITOR first approached Dataworks Development on July 1, 2013, making an initial inquiry regarding Freezerworks.  Assured the product would meet all the requirements, the purchase was made in late September. By the middle of October, a Freezerworks specialist (a non-programmer) working with the ITOR staff, came onsite to develop the blueprint in accordance with the wishes of the biorepository.  Working with the staff, the bulk of the system – fields, screens and training, was in place within five days, with the staff now comfortable enough to make additions and changes on an as-need basis.  Immediately following the 5 day site visit, the program went “live” with the staff entering a minimal amount of data for its incoming blood, malignant and normal tissue samples. By November, much of the data from the old system was exported and imported into Freezerworks, and the system and its 1500 fields went fully live in January.

Timetable to Implementation

·         July 1 – Initial inquiry

·         September – purchase of Freezerworks

·         October – configuration of the system, mostly during a 5 day site visit

·         October/November – Go live with real time entry of a minimal data set

·         December – import of significant amount of data from replaced system

·         January – Go fully live with in depth data capturing

Go here for more information on the Freezerworks setup and its use at ITOR

About Dataworks Development, Inc.

Dataworks Development, Inc. (DWD) is headquartered just north of Seattle in the Pacific Northwest city of Mountlake Terrace, WA. Since its founding in 1987, it has been a global provider of configurable laboratory software and data management, most notably in providing virology data management for the AIDS Clinical Trials Group (ACTG) in the early years of the HIV crisis. 

Because of its flexibility with strong adherence to standards in a validated environment, hundreds of research and clinical laboratories today rely on its flagship product Freezerworks for effective laboratory and sample management. Its clients include many of the finest research institutions, pharmaceutical and biotech companies and hospitals throughout the globe, with a strong presence in the burgeoning and vital biobanking movement.       

Contact: Rick Michels, VP Marketing

Dataworks Development, Inc

Rick@dwdev.com