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Financing and collaboration on research and development for nodding syndrome.

ABSTRACT: 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.

SUBMITTER: Ardal C

PROVIDER: S-EPMC4794815 | biostudies-other | 2016 Mar

REPOSITORIES: biostudies-other

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Financing and collaboration on research and development for nodding syndrome.

Årdal Christine C Røttingen John-Arne JA

Health research policy and systems 20160317

<h4>Background</h4>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 ...[more]

PMID: 26983551

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Project description:Background: Partnership, engagement, and collaboration (PEC) are critical factors in dissemination and implementation (D&I) research. Despite a growing recognition that incorporating PEC strategies in D&I research is likely to increase the relevance, feasibility, impacts, and of evidence-based interventions or practices (EBIs, EBPs), conceptual frameworks and methodologies to guide the development and testing of PEC strategies in D&I research are lacking. To address this methodological gap, a review was conducted to summarize what we know, what we think we know, and what we need to know about PEC to inform D&I research. Methods: A cross-field scoping review, drawing upon a broad range of PEC related literature in health, was conducted. Publications reviewed focused on factors influencing PEC, and processes, mechanisms and strategies for promoting effective PEC. The review was conducted separately for three forms of partnerships that are commonly used in D&I research: (1) consumer-provider or patient-implementer partnership; (2) delivery system or implementation team partnership; and (3) sustainment/support or interagency/community partnership. A total of 39 studies, of which 21 were review articles, were selected for an in-depth review. Results: Across three forms of partnerships, four domains (cognitive, interpersonal/affective, behavioral, and contextual domains) were consistently identified as factors and strategies for promoting PEC. Depending on the stage (preparation or execution) and purpose of the partnership (regulating performance or managing maintenance), certain PEC strategies are more or less relevant. Recent developments of PEC frameworks, such as Partnership Stage of Change and multiple dynamic processes, provide more comprehensive conceptual explanations for PEC mechanisms, which can better guide PEC strategies selection and integration in D&I research. Conclusions: This review contributes to D&I knowledge by identifying critical domain factors, processes, or mechanisms, and key strategies for PEC, and offers a multi-level PEC framework for future research to build the evidence base. However, more research is needed to test PEC mechanisms.

Project description:Interdisciplinary research collaboration is needed to perform transformative science and accelerate innovation. The Science of Team Science strives to investigate, evaluate, and foster team science, including institutional policies that may promote or hinder collaborative interdisciplinary research and the resources and infrastructure needed to promote team science within and across institutions. Social network analysis (SNA) has emerged as a useful method to measure interdisciplinary science through the evaluation of several types of collaboration networks, including co-authorship networks. Likewise, research administrators are responsible for conducting rigorous evaluation of policies and initiatives. Within this paper, we present a case study using SNA to evaluate inter-programmatic collaboration (evidenced by co-authoring scientific papers) from 2007-2014 among scientists who are members of four formal research programs at an NCI-designated Cancer Center, the Markey Cancer Center (MCC) at the University of Kentucky. We evaluate change in network descriptives over time and implement separable temporal exponential-family random graph models (STERGMs) to estimate the effect of author and network variables on the tendency to form a co-authorship tie. We measure the diversity of the articles published over time (Blau's Index) to understand whether the changes in the co-authorship network are reflected in the diversity of articles published by research members. Over the 8-year period, we found increased inter-programmatic collaboration among research members as evidenced by co-authorship of published scientific papers. Over time, MCC Members collaborated more with others outside of their research program and outside their initial dense co-authorship groups, however tie formation continues to be driven by co-authoring with individuals of the same research program and academic department. Papers increased in diversity over time on all measures with the exception of author gender. This inter-programmatic research was fostered by policy changes in cancer center administration encouraging interdisciplinary research through both informal (e.g., annual retreats, seminar series) and formal (e.g., requiring investigators from more than two research programs on applications for pilot funding) means. Within this cancer center, interdisciplinary co-authorship increased over time as policies encouraging this collaboration were implemented. Yet, there is room for improvement in creating more interdisciplinary and diverse ties between research program members.

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Financing and collaboration on research and development for nodding syndrome.

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Financing and collaboration on research and development for nodding syndrome.

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