Financing and collaboration on research and development for nodding syndrome
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Published on: August 16, 2010
Christine Årdal1, John-Arne Røttingen2,3,4
1Department of International Public Health, Norwegian Institute of Public Health, Oslo, Norway. christine.ardal@fhi.no.
Insights
Nodding syndrome research is limited but collaborative, with open sharing of findings. Increased funding and open source innovation are crucial for this neglected tropical disease affecting children in East Africa.
Area of Science:
- Neurology
- Global Health
- Open Science
Background:
- Nodding syndrome is a neglected neurological disease impacting children (3-18 years) in East Africa, characterized by cognitive decline, wasting, and potential death.
- The disease's cause, risk factors, and prognosis remain largely unknown, hindering effective treatment and market-driven solutions due to a small, impoverished patient population.
- Open source innovation is proposed as a strategy to enhance research for neglected diseases by fostering collaboration and data sharing.
Purpose of the Study:
- To assess the current research landscape for nodding syndrome, including its scope, accessibility, funding, and collaborative efforts.
- To explore researchers' motivations and perspectives on open source innovation and identify barriers to increased collaboration in nodding syndrome research.
Main Methods:
- Evaluated the volume, availability, and funding of nodding syndrome research.
- Analyzed the degree of collaboration among researchers in the field.
- Surveyed researchers about their motivations, attitudes towards open source innovation, and perceived barriers to collaboration.
Main Results:
- Research on nodding syndrome is minimal but characterized by high levels of openness and collaboration among scientists.
- The disease's low profile is partly due to its absence from the World Health Organization's neglected tropical diseases list.
- Uganda shows significant research ownership through authorship and funding, with total grant funding from 2013-2019 reaching €5 million, doubling between 2014 and 2015.
Conclusions:
- Nodding syndrome, once overlooked, is gaining attention, though funding remains limited.
- Open source innovation can accelerate progress by facilitating shared research protocols and early results, preventing duplication and enabling adaptive strategies.
- Increased financing, potentially from high-income countries, is essential to support existing scientific endorsement of open source innovation and address this neglected disease.
Background:
Nodding syndrome is a neurological disease with no known cure or treatment, impacting children aged 3-18 years old, mainly in East Africa. Children progressively develop varying degrees of cognitive impairment which may lead to severe wasting, a vegetative state and, eventually, death. Despite its 50-year existence, little is known about its cause, risk factors and prognosis. It is a disease where markets will not provide solutions because the patients are both too few and too poor, making it especially neglected. Open source innovation has been recommended as an approach to neglected disease research in order to maximize available funding through greater collaboration and openness to results. Nodding syndrome is a useful case to examine the relevance of open source innovation.
Methods:
We assessed the magnitude of research related to nodding syndrome, its availability, financing and the amount of collaboration. We surveyed researchers regarding their motivations, attitudes toward open source innovation concepts and barriers to greater collaboration.
Results:
Little research is occurring for nodding syndrome, but it is openly available and researchers are highly collaborative. The disease is largely unknown, which is partly attributed to WHO not classifying nodding syndrome as a neglected tropical disease and not including it in any formal programme. Impacted countries, particularly Uganda, demonstrate a strong degree of ownership through both authorship and research financing. Nodding syndrome researchers have been allocated a total of €5 million from 2013 to 2019 in grant funding. Annual financing, due to three new grants, doubled from 2014 to 2015.
Conclusions:
Nodding syndrome, a disease previously ignored by the international community, is starting to receive greater attention, although financing remains modest. If infectious, a larger epidemic could take the world by surprise. Open source innovation can likely help by sharing research protocols (to avoid duplication) and early research results (to adjust to the findings of others). The existing scientists have already endorsed open source innovation, but increased financing is needed. The support of just a few high-income countries could reap a large impact.
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