Via WHO's Regional Office for Africa, an August 1 report that I missed at the time: Nodding Syndrome meeting, researchers agree on case definition and establish research agenda. Excerpt:
The key objective achieved by the meeting was a standardized case definition for suspect and probable cases of NS. Although the multinational audience has referred to this illness as ‘Nodding Disease’ and ‘Head Nodding Disease’ in the past, a consensus was reached to refer to the combination of signs and symptoms as Nodding Syndrome.
This term will provide consistency across all research activities in the future. The researchers and representatives from thethree countries identified key strategic steps that the meeting participants should take to move forward on NS research. For example, researchers should conduct systematic surveys to determine prevalence, burden, and geographic distribution of NS.
Other topics for next steps include clinical case management, collaborative research with conference participants, and the involvement of additional specialty fields in research including anthropology.
In their closing remarks, leaders from the Uganda Ministry of Health, World Health Organization (WHO), Centers for Disease Control and Prevention (CDC) and the UK Department of International Development (DFID) all expressed their thanks and gratitude to the researchers, conference participants and the media.
As the chairman of the closing ceremony, Dr. Anthony Mbonye, Ministry of Health, expressed, “When we came here on Monday, we aimed to have a case definition. We aimed to have a research agenda. We aimed to have research collaboration. I think we achieved these things”.
Dr. Jenny Amery, DFID, further expressed her perception of one of the meetings outcomes, “we worked on taking forward the important issues of care and management of the poor children affected by this syndrome.”
In his closing remarks, Dr. Scott Dowell, CDC, reminded the participants of the significance of these deliberations, but redirected the attention to the children with NS. Dr. Dowell said, “I hope that we hold on to a sense of urgency that the kids with this syndrome deserve.”
The WHO Country Representative Dr Joaquim Saweka noted that “the syndrome is still with us and we need to use the information shared in this meeting to alleviate the suffering of the affected childrens much as possible”.
Uganda’s Director General of Health Services Dr Jane Ruth Aceng closed the meeting on behalf of the Health Minister with a series of remarks that complimented the participants on the success of the meeting and urged the participants and Ministries of Health to continue to move the scientific research forward.
Dr. Aceng insisted that coordinated collaboration in NS research is necessary; she said “If we work in an uncoordinated way, we will not make progress with Nodding Syndrome.”