By Suzanne Vernon, PhD, Scientific Director
The CFIDS Association supports data-sharing as a means to rapidly expand research on CFS. We participate as a member of the Alliance for Taxpayer Access and we have regularly urged federal agencies to adopt data-sharing policies.
At the request of the Association and other research advocates, the Center for Disease Control’s CFS research group has recently made available its large data set from the Wichita clinical study of CFS. The data sets were collected during a two-day in-hospital clinical assessment study conducted from December 2002 to July 2003 in Wichita, KS (referred to as Wichita Clinical Study). The study enrolled 227 people and classified them into five study groups. CFS patients were classified using the 1994 case definition (Fukuda et al., Annals of Internal Medicine).
There are 32 data sets including demographic, clinical, laboratory, medication usage, cytokines, endocrine, sleep, single nucleotide polymorphism and gene expression data. For more information about the methods by which data was collected and the specific data sets, please visit http://www.cdc.gov/cfs/programs/wichita-data-access/index.html.
Interested researchers must apply to the CDC Research Data Center for access to the data and standard fees apply. We applaud CDC’s efforts to make this rich data set more widely available and encourage the agency to explore ways to remove or reduce these barriers to fully meet the four principles of taxpayer access outlined by the Alliance:
- American taxpayers are entitled to open access on the Internet to the peer-reviewed scientific articles on research funded by the U.S. government.
- Widespread access to the information contained in these articles is an essential, inseparable component of our nation’s investment in science.
- This and other scientific information should be shared in cost-effective ways that take advantage of the Internet, stimulate further discovery and innovation and advance the translation of this knowledge into public benefits.
- Enhanced access to and expanded sharing of information will lead to usage by millions of scientists, professionals and individuals, and will deliver an accelerated return on the taxpayers’ investment.
Suzanne Vernon, PhD, is the Association’s scientific director. She has nearly two decades of experience as a microbiologist.