The Open Brain Consent: Informing research participants and obtaining consent to share brain imaging data

11 Apr

Grading system for assessing the confidence in the epileptogenic zone reported in published studies: A Delphi consensus study

Objective: This study was undertaken to develop a standardized grading system based on expert consensus for evaluating the level of confidence in the localization of the epileptogenic zone (EZ) as reported in published studies, to harmonize and facilitate systematic reviews in the field of epilepsy surgery.

Methods: We conducted a Delphi study involving 22 experts from 18 countries, who were asked to rate their level of confidence in the localization of the EZ for various theoretical clinical scenarios, using different scales. Information provided in these scenarios included one or several of the following data: magnetic resonance imaging (MRI) findings, invasive electroencephalography summary, and postoperative seizure outcome.

Results: The first explorative phase showed an overall interrater agreement of .347, pointing to large heterogeneity among experts' assessments, with only 17% of the 42 proposed scenarios associated with a substantial level of agreement. A majority showed preferences for the simpler scale and single-item scenarios. The successive Delphi voting phases resulted in a majority consensus across experts, with more than two thirds of respondents agreeing on the rating of each of the tested single-item scenarios.

11 Apr

Reply to: Questioning the cycad theory of Kii ALS-PDC causation

We read with great interest the Correspondence to our recent Review (Menšíková, K. et al. Endemic parkinsonism: clusters, biology and clinical features. Nat. Rev. Neurol. 19, 599–616 (2023)¹) by Kokubo and colleagues (Kokubo, Y., Morimoto, S. & Yoshida, M. Questioning the cycad theory of Kii ALS–PDC causation. Nat. Rev. Neurol. https://doi.org/10.1038/s41582-024-00936-0 (2024)²). We are aware that Kokubo — together with the late S. Kuzuhara — systematically studied amyotrophic lateral sclerosis–parkinsonism–dementia complex (ALS–PDC) on the Kii Peninsula for more than 30 years. They authored and co-authored numerous papers about this endemic disease, some of them with one of us (R.S.). We therefore considered the comments raised by Kokubo et al. carefully, and here we respond to the questions that they have raised.

Kokubo et al. state that the use of cycad seed in herbal and folk medicine, and as a tonic in children, is very rare. However, in the northeastern Kii (Hohara) focus of ALS–PDC, the seed of Cycas revoluta was prescribed throughout the 1980s by kitoshi (folk medicine practitioners) and dispensed by local pharmacies for the oral treatment of various ailments, including diarrhoea, dysmenorrhoea, gonorrhoea, tuberculosis and neuralgia, in accordance with published guidance³.