Financing and collaboration on research and development for nodding syndrome

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.