Image courtesy of the National Institute on Aging/NIH
Fogarty has spurred significant advances in the
understanding of brain disorders, including Alzheimer's
disease, in the developing world.
A Fogarty program designed to advance research into brain disorders that affect the developing world has had "tremendous success," according to a recently published evaluation of its first decade of activity. The initiative has resulted in "significant" scientific advances and has increased brain disorders capacity around the globe, the review stated.
A range of brain disorders emerge at various life stages, which pose particular challenges in the developing world, where expertise and treatment are lacking. In 2003, Fogarty and its NIH partners established the Brain Disorders in the Developing World: Research Across the Lifespan Program. Over the next 10 years, eight NIH Institutes and Centers joined Fogarty in providing a total of $84 million through 156 grants that support research in the area of nervous system development, function and impairment throughout life, as well as research training to build capacity in these scientific areas.
"With broad support from across NIH, we have been able to catalyze the field of brain disorder research on topics of relevance to developing countries, where these issues pose a growing problem," said Fogarty Director Dr. Roger I. Glass. "It is vital we build the multidisciplinary capacity required to study and treat these devastating diseases that occur across the lifespan."
The brain initiative, managed by Fogarty's Dr. Kathleen Michels, is structured to support exploratory or developmental research grants (R21s), full research project awards (R01s), as well as an annual network meeting. During the R21 award period, applicants have two years to initiate preliminary studies and training, and to prepare information to apply for a more comprehensive R01 award that incorporates both research and, importantly, capacity building. The program model allows investigators in the U.S. and other high-income countries to gain experience working in low-and middle-income country (LMIC) settings, while strengthening the research base of the U.S. and foreign institutions in LMICs through research collaborations.
The program evaluation was conducted with information from a survey, NIH databases and interviews with NIH staff, grantee investigators and foreign collaborators. Portions of the data collection and analysis were conducted by the Science and Technology Policy Institute, a federally funded research and development center chartered by Congress to advise U.S. government agencies. Data collection and analysis was designed and overseen by Fogarty's science policy division. Representatives from NIH partners with equities in the brain program reviewed and approved the report.
Evaluation details program's achievements
One metric of the program's success is the number of publications produced, which enable grantees to share relevant and important research evidence with the brain disorders community. Investigators have generated discoveries in topics across the spectrum, from mental health and substance abuse, to peripheral nervous system trauma, to gene-environment interactions. During the first 10 years of the program, participants published 435 peer-reviewed articles in 249 unique journals, in addition to 14 books or book chapters, the evaluation stated. In addition, grantees also produced tools for clinical assessment in the LMIC context, developed and evaluated new interventions, and identified novel lab tools or methods.
Nearly all program participants reported their projects included training or mentoring at the LMIC site, in skills, methods or procedures essential to the research project, the survey found. About 70 percent also held training in a high-income country, as well as hosted a variety of workshops on specific brain disorders topics or clinical or research skills. The majority reported training in research ethics as a component. Almost half supported training for developing country personnel at an LMIC site that was not a primary collaborator on the project. The program supported in-depth instruction for at least 138 scientists, for an average of 23 months.
In the survey, a number of grantees reported the program had a significant impact on advancing their careers and creating a research path. One noted the initiative helped upgrade his university's ranking due to the increased research capacity. Participants also commended Fogarty for hosting annual network meetings, maintaining an active Listserv and facilitating communication through social media.
Discoveries inform policy
In addition to contributing to a growing scientific field and building research capacity in developing countries, there are several examples where data generated by program participants have provided critical evidence used to inform international and national practice and policy.
While the evaluation acknowledges it is difficult to determine the direct influence of projects on policy decisions, grantees reported a number of compelling anecdotes that are presented as case studies in the evaluation's appendix. These include identifying and helping remove a global barrier to availability of an anti-epileptic drug in Africa, increasing awareness of fetal alcohol syndrome on a national level in Russia, and convincing the Peruvian government to institute acyclovir treatment for Herpes Simplex Virus encephalitis.
Projects generate spin-offs
In the survey, many grantees described how they had successfully extended the reach of their brain program-funded activities through additional funding. Specifically, 65 percent of awardees report having submitted applications to other funders for spin-offs, or new research projects that were catalyzed or otherwise enabled by the brain program. Nearly half of these have been funded - a dozen by NIH, three by Canada, 15 by LMIC countries and 19 by foundations and other organizations.
Review identifies areas for improvement
Despite the program's successes, there are areas for improvement, the evaluation concluded. Participants expressed concern that review panels are not always well informed about the program's intentions in terms of capacity building versus research, nor did they always possess a good understanding of some of the mitigating factors involved in international research. In addition, the process of transferring funds tends to be a slow and time-consuming procedure, some reported.
Several grantees suggested the program promote further engagement in LMIC cultures or governments. One survey respondent stated that there should be a greater emphasis on the cultural or international variations in health factors. Another discussed the need for better dialogue between the NIH and governments; with approvals for protocol and funds substantially different in LMICs, improved communication could be valuable in avoiding delays in funding. Other awardees reported the lack of sufficient skills among LMIC partners posed a barrier to collaboration and suggested training be provided for research methodology and advanced statistical analysis. Finally, it was recommended that the program should facilitate a multi-country approach. Specific instances would be encouraging multi-site projects in different LMICs or allowing lead investigators and funds to move among institutions more easily so they can set up more research centers and sites in various countries.
The evaluation recommended future iterations of the program should enhance collaboration and networking to more firmly establish a community of practice, strengthen the focus on implementation science and develop a systematic approach to measuring capacity building. In addition, efforts should be made to develop funding partnerships beyond NIH and encourage grantees to dovetail research efforts with other international, large-scale, longitudinal or cohort neuroscience studies. However, the report suggested the program should maintain its existing flexibility in how capacity building is defined and continue to support research on a range of disorders occurring at different points in the lifespan.
Program enjoys broad support
NIH partners listed on program solicitations over time have included the National Eye Institute (NEI), National Institute on Aging (NIA), National Institute on Alcohol Abuse and Alcoholism (NIAAA), Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), National Institute on Drug Abuse (NIDA), National Institute of Environmental Health Sciences (NIEHS), National Institute of Mental Health (NIMH), National Institute of Neurological Disorders and Stroke (NINDS), and the Office of Dietary Supplements (ODS). Other partners that have provided funding are the Institute of Neuroscience, Mental Health and Addiction at the Canadian Institutes of Health Research, the National Council of Science and Technology in Mexico, Autism Speaks and the National Alliance for Autism Research.
The evaluation is part of a larger brain disorders-related initiative spearheaded by Fogarty's Center for Global Health Studies, which will result in a journal supplement outlining gaps, opportunities, and emerging priorities in brain disorders-related research and training as they relate to LMICs.
"With mental, neurological and substance use disorders forecast to climb in the next decades, it is critical we continue to support this valuable program," Glass noted. "Because the rise will be steeper in developing countries - due to the continuing and long-lasting effects of early life trauma, infectious diseases and malnutrition - we must strengthen our efforts to reduce this terrible burden."