Also in this issue

Starting Up
• Communities Tackle Salvadoran Gang Problem
• Energizing Ugandans to Lift Their Democracy

Publications
Healey, Of Square Pegs and Round Holes: Training in Developing Countries

Mitchell, How Information-Based Planning Can Flourish Where Traditional Politics Reign: An Example from Pakistan

Kim, Canh, Poulos, et al., Private Demand for Cholera Vaccines in Hue, Vietnam

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As implied by the project’s acronym, the International Epidemiological Databases to Evaluate AIDS (IeDEA) is a large, innovative, and unique project funded by the U.S. National Institute of Allergy and Infectious Diseases. Covering nine world regions, all but Northern Africa, Western Europe, and China, IeDEA aims to gather and harmonize HIV/AIDS data, particularly on the use of highly active antiretroviral therapy (ARV), to answer priority questions about HIV/AIDS. Large sample sizes and standardized data compiled into a central database will allow IeDEA partners to address new research questions, generalize more study results thanks to data from multiple settings and populations, and more accurately monitor the HIV epidemic in the various regions, as well as globally.

Dr. Wilfred Akam, director of the Limbé Provincial Hospital in Cameroon, gives IeDEA–Central Africa staff a tour of the facility. [Photo: Jennifer Hemingway-Foday]

RTI was chosen in 2006 to lead the Central Africa (CA) regional data center for IeDEA and to be the Coordinating Center responsible for logistical components and communication for all cross-regional collaborations. The Central Africa consortium currently consists of RTI plus 13 research units—hospitals, clinics, or similar facilities—in Burundi, Cameroon, the Democratic Republic of the Congo (DRC), and Rwanda. It includes both adult and pediatric facilities. The consortium chose the clinics in collaboration with HIV experts in each country based on their ability to meet the project’s data collection needs. They represent approximately 20,200 patients currently on ARVs and an additional 46,000 HIV-infected individuals. As patient care data are collected from the care facilities, they are stored via the IeDEA–Central Africa website, as well as at RTI in North Carolina, and will be integrated into the global data. The DRC’s Kinshasa School of Public Health, which also partners with RTI on the Global Network for Women’s and Children’s Health Research project funded by the U.S. National Institute of Child Health and Human Development, provides significant administrative support for IeDEA.

Getting Started

Much of the initial work under the project has been spent developing clinical data collection forms; creating systems, structures, and processes in the project facilities; and training clinic nurses and doctors to collect and enter the data into an electronic database. Central Africa is well behind the other IeDEA project regions, including others in Africa, with regard to existing infrastructure and electronic databases. For instance, Burundi had never before received funding from the United States government to do research, so it did not have an Institutional Review Board (IRB—an independent ethics committee) in place as is required by U.S. National Institutes of Health grants. Principal Investigator Tyler Hartwell said, “Before RTI could begin to gather data, we had to provide information on what IRBs were, why they were needed, and how they operated.” RTI set up a mentoring relationship between Burundi and the DRC. An IRB at the Kinshasa School of Public Health will assist with Burundi’s process, such as registering with the United States Office of Human Research, getting the right membership, and setting up ethics training courses for their investigators. Hartwell added, “Now Burundi will be better able to apply for U.S. funding for activities in health and in other sectors. Previously, they didn’t have the capacity or the systems to meet the strict reporting requirements of programs such as the President’s Emergency Plan for AIDS Relief.”

Project implementation has progressed more quickly in the DRC, due to higher capacity and existing systems, with data collection beginning at three adult clinics in February 2007. Rwanda joined in late 2008 and hosted the IeDEA–Central Africa Executive Committee Meeting in Kigali in January 2008, where the focus was on finalizing its data collection forms. After IRB clearance, RTI hopes to start gathering data there in mid-2008.

Going Beyond Data

In addition to establishing systems and processes for gathering data, RTI is developing AIDS-related cancer research activities, including a surveillance system in Cameroon and an improved cervical cancer screening test in Rwanda. Certain types of cancer, such as Kaposi’s sarcoma and lymphoma, are more commonly seen in people with HIV/AIDS and often patients are diagnosed and treated for only one of these diseases—HIV/AIDS or cancer. RTI is working with Cameroon’s Solidarity Chemotherapy Association to develop the surveillance system, which will capture nearly all incident cases of cancer diagnosed in 12 consecutive months in individuals officially residing in the urban area of Yaoundé, approximately 4.5 million people. This will greatly improve the ability of medical staff to watch for different types of cancer and additionally to link those patients to HIV/AIDS testing and treatment services.

Development of a standardized site assessment tool for determining the quantity and quality of available data on AIDS-related cancers is also planned.

Two nurses in the Democratic Republic of the Congo place identification labels on the project’s data collection. [Photo: Robin Ryder]

Ensuring the Sustainability of IeDEA

Health facility administrators and physicians have embraced the introduction of the IeDEA–Central Africa research data collection forms and data management system, as they have improved the quality and completeness of patient data in project facilities. The DRC and Burundi sites have adopted the data collection form as their standard clinical medical record and the research units in Cameroon are evaluating whether to do this at their sites.

The IeDEA project team was drawn from existing staff at the facilities, so capacity is being built locally to do the work. As Project Manager Jennifer Hemingway-Foday said, “IeDEA has developed a proactive mechanism for collecting information on key variables, and it will enhance the quality, cost, effectiveness, and speed of HIV/AIDS research in the region and worldwide. It is important that the systems it creates are accepted and embedded into the hospitals and clinics in which we are working, so that the data collection can continue long after this project.”

More information:
Jennifer Hemingway-Foday, e-mail hemingway@rti.org;
IeDEA website: www.iedea-hiv.org/