Electronic data capture (EDC) has received the most attention in large pharmaceutical companies, but it may also have profound consequences in smaller scientific organizations.

Indeed, it could do for biomedical research what the Internet did for communications: democratize it. The technology may foster a multidisciplinary, global research opportunity for new participants—small research groups, individual researchers, biospecimen banks and others.

Just as some Fortune 500 companies in the technology sector were eclipsed in the 1990s by start-ups, the most innovative ideas in biomedical research may come from smaller players, groups and researchers interacting globally instead of large pharma and university medical centers.

New Tools, New Science

EDC now makes it affordable to undertake research that could not previously have been done on a large scale due to cost constraints. Data sharing made possible through EDC technologies will now enable more collaborative, interdisciplinary science.

New patient advocacy groups have emerged and begun to link their clinical data repositories and biospecimen banks. These repositories are typically open to all researchers globally. This is one of the best things to happen in medicine in a long time.

Where Software Helps

Two aspects of the medical landscape have changed. We have just entered an era characterized by huge amounts of genomic, proteomic and other laboratory data linked to biobanks. And the technology sector has just developed the ability to capture, integrate and access this data rapidly, electronically and cheaply.

Corporations do run biobanks, but typically do not make specimens or data available to outsiders. Some biobanks have been run by government research authorities or nonprofits. Leading national biobanks include the Multiple Myeloma Research Consortium, the Joubert Syndrome Foundation and Cure Autism Now.

Public Biobanks

Another example is the Accelerated Cure Project for Multiple Sclerosis (MS), a U.S.-based nonprofit dedicated to curing the disease. Its biobank demonstrates the potential of a public biobank that is open to researchers globally. 

The Accelerated Cure Project is developing a multidisciplinary repository through the collection of biomedical samples and data from subjects with MS and selected other demyelinating diseases (transverse myelitis, neuromyelitis optica or Devic’s, acute disseminated encephalomyelitis, and optic neuritis), their relatives and unrelated matched controls.

Caring & Sharing

The Accelerated Cure Project repository contains samples and data from over 800 subjects, those with MS and other demyelinating diseases, and controls.  These samples will support scientists working in many fields: genetics, nutrition, virology, and more, allowing for large-scale studies within each discipline. 

In this new, public model, researchers who receive samples and data from the repository will be required to return their research results to the database to be shared. This will allow cross-pollination of their results with all studies done using the repository, resulting in virtual multi-disciplinary research. Scientists have always shared their data. But now technology can expedite and formalize such exchanges and open them up to smaller labs anywhere on the planet.

Enabling Collaboration

EDC, in short, makes the data accessible. The organizers of the Accelerated Cure Project repository elected to use our firm’s technology for electronic data capture. Until EDC technology made it affordable, scientists and researchers did not have access to large numbers of samples and data, therefore they tended not to study multiple disciplines.

But through the creation of the repository, the Accelerated Cure Project repository is addressing two of the major obstacles hindering the search for the roots of MS.  First, MS may be more than one disease. Larger numbers of patients will need to be studied to sort out a variety of related ailments. Second, MS is not likely to be caused by a single factor. Teasing out the importance of combinations of factors will only be possible if research is conducted across disciplines.

Slicing Costs

The Accelerated Cure Project data repository is currently being developed through the collection of samples and data at six collection sites across the United States. It has distributed samples and data to six research teams, with two more studies pending. The use of EDC allows staff at these geographically distant collection sites to interview subjects and enter the resulting data into the common database. 

Before EDC, it would have been prohibitively expensive to set up and manage the huge amounts of clinical data in this repository. For example, the collection goal of the Accelerated Cure Project is samples and data from 10,000 subjects. Each subject is associated with 46 screens of subject data, for a total of 460,000 screens of data. At an average cost of $10 per screen, the total comes to $4.6 million.

Fixed Price

Ten years ago, before the advent of EDC to enable the development of this repository, the same data collection would have cost on the order of $10 million. EDC allows each site to only access the data from their enrolled subjects, while allowing the study’s organizer global access to the data.

As additional data is collected in the future, the price will not increase exponentially in an electronic data repository. To use the technology jargon, EDC scales better than paper forms. The base investment in EDC technology remains constant at about $200,000 regardless of the size of the project or amount of data collected.

Cleaner Data

A key advantage to using EDC for the development of the repository is the reduction in time to “clean” data. The Accelerated Cure Project organizers conducted a pilot study prior to embarking on developing the full-scale repository. During the pilot study, the data collection process used paper case report forms (CRFs) that were much more cumbersome than the electronic approach.

With the use of EDC, discrepancies and errors are flagged during data entry, and are then resolved within seconds during the initial interview. By capturing the data electronically during the interview process, and having it checked by the system in real time, clean data is achieved significantly faster and at a lower cost.  This allows the Accelerated Cure Project to make data available to researchers much more quickly.

It has been gratifying to lower the cost of collaboration so dramatically. The barriers to entry for new and smaller players to enter clinical research have been significantly reduced, and that’s good news for medical progress. 

is CEO of DSG, Inc. The Accelerated Cure Project repository organizers partnered with DSG to use the company’s eCaseLink EDC software to design, host and manage data collection for the data repository. eCaseLink was also used for data collection for the International Ectasia Registry of the American Society for Cataract and Refractive Surgery.

Editor’s note: Donors or scientific collaborators can contact the Accelerated Cure Project at (781) 487-0008 or .