Aledo-Serrano, A. (Angel)

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    The Charlotte Project: Recommendations for patient-reported outcomes and clinical parameters in Dravet syndrome through a qualitative and Delphi consensus study
    (Frontiers, 2022) Gil-Nagel, A. (Antonio); Aras, L.M. (Luis Miguel); Mingorance, A. (Ana); Sanchez-Carpintero, R. (Rocío); Blanco, B. (Barbara); Aledo-Serrano, A. (Angel); Yaniz, M.J. (Maria Jose); Aibar, J.A. (Jose Angel); Camara, S. (Silvia); Villanueva, V. (Vicente); García-Peñas, J.J. (Juan José); Boronat, S. (Susana)
    Objective: The appropriate management of patients with Dravet Syndrome (DS) is challenging, given the severity of symptoms and the burden of the disease for patients and caregivers. This study aimed to identify, through a qualitative methodology and a Delphi consensus-driven process, a set of recommendations for the management of DS to guide clinicians in the assessment of the clinical condition and quality of life (QoL) of DS patients, with a special focus on patient- and caregiver-reported outcomes (PROs). Methods: This study was conducted in five phases, led by a multidisciplinary scientific committee (SC) including pediatric neurologists, epileptologists, a neuropsychologist, an epilepsy nurse, and members of DS patient advocates. In phases 1 and 2, a questionnaire related to patients’ QoL was prepared and answered by caregivers and the SC. In phase 3, the SC generated, based on these answers and on a focus group discussion, a 70-item Delphi questionnaire, covering six topic categories on a nine-point Likert scale. In phase 4, 32 panelists, from dierent Spanish institutions and with a multidisciplinary background, answered the questionnaire. Consensus was obtained and defined as strong or moderate if ≥80% and 67–79% of panelists, respectively, rated the statement with ≥7. Phase 5 consisted of the preparation of the manuscript. Results: The panelists agreed on a total of 69 items (98.6%), 54 (77.14%), and 15 (21.43%) with strong and moderate consensus, respectively. Frontiers in Neurology 01 frontiersin.or Aledo-Serrano et al. 10.3389/fneur.2022.975034 The experts’ recommendations included the need for frequent assessment of patient and caregivers QoL parameters. The experts agreed that QoL should be assessed through specific questionnaires covering dierent domains. Likewise, the results showed consensus regarding the regular evaluation of several clinical parameters related to neurodevelopment, attention, behavior, other comorbidities, and sudden unexpected death in epilepsy (SUDEP). A consensus was also reached on the instruments, specific parameters, and caregivers’ education in the routine clinical management of patients with DS. Conclusions: This consensus resulted in a set of recommendations for the assessment of clinical and QoL parameters, including PROs, related to the general evaluation of QoL, neurodevelopment, attention, behavior, other comorbidities aecting QoL, SUDEP, and QoL of caregivers/relatives and patients with DS
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    Gene therapies and COVID-19 vaccines: a necessary discussion in relation with viral vector-based approaches
    (BMC, 2021) Aledo-Serrano, A. (Angel); Gil-Nagel, A. (Antonio); Isla, J. (Julian); Mingorance, A. (Ana); Mendez‑Hermida, F. (Fernando); Hernández-Alcoceba, R. (Rubén)
    The COVID-19 pandemic is adding an unanticipated concern for those affected by genetic diseases. Most of the new treatment achievements for these patients are made possible as a result of advances in viral-based products. Among them, adenoviruses (AdV) and especially adeno-associated viruses (AAV) are important players. The concerns and the conversation around this issue have increased as COVID-19 vaccines approach the market. What if the viral vectors become the mainstream strategy for vaccine development? Will the immune response elicited against the vector compromise the efficacy of future gene therapies? Patients with genetic diseases and patient advocacy groups are requesting information to the medical community about the potential impact of these vaccines in future gene therapy treatments, and physicians and scientists are not able to provide satisfactory answer yet. Importantly, the frequency of cross-reactivity among different AAV serotypes can be as high as 50%. This would have potential implications for patients with genetic disorders who could benefit from gene therapies, often coming in the form of AAV-based gene therapies. As in many other aspects, this pandemic is challenging our capacity to coordinate, plan ahead and align different medical objectives. In this case, having such conversation early on might allow us to make the right choices while we are still on time.
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    COVID-19 prevalence and mortality in people with epilepsy: A nation-wide multicenter study
    (Elsevier, 2021) Sánchez-Larsen, Á. (Álvaro); Conde-Blanco, E. (Estefanía); Viloria-Alebesque, A. (Alejandro); Sánchez-Vizcaína Buendía, C. (Cristina); Espinosa-Oltra, T. (Tatiana); Álvarez-Noval, A. (Amanda); Aledo-Serrano, A. (Angel); Martín-García, R. (Raquel); Ramos-Araque, M.E. (María E.); Campos, D. (Dulce); Valle-Peñacoba, G. (Gonzálo); Sierra-Gómez, A. (Alicia); Ceballos-Cerrajería, P. (Pablo de); Agundez-Sarasola, M. (Marta); Khawaja, M. (Mariam); Hampel, K.G. (Kevin G.); Serra-Martínez, M. (María); Arbós-Barber, C. (Clara); Gomez-Ibañez, A. (Asier); Villino, R. (Rafael); Cabezudo-García, P. (Pablo); Rodríguez-Lavado, I. (Ignacio); Prícipe, A. (Alessandro); Sopelana-Garay, D. (David)
    Background To assess the prevalence, severity, and mortality of COVID-19 in people with epilepsy (PWE) and evaluate seizure control in PWE during and after COVID-19. Methods Retrospective, observational, multicenter study conducted in 14 hospitals. Medical records of randomly selected PWE followed at neurology outpatient clinics were reviewed. Proportion of PWE with a positive test for SARS-CoV-2 during 2020 was calculated. Risk factors associated with COVID-19 and its morbimortality were evaluated. Results 2751 PWE were included, mean age 48.8 years (18–99), 72.4% had focal epilepsy, and 35% were drug-refractory. COVID-19 prevalence in PWE was 5.53%, while in the Spanish population was 4.26%. Proportion of admissions to hospital, ICU, and deaths in PWE were 17.1%, 2%, and 4.61% of COVID-19 cases, while in Spanish population were 10.81%, 0.95%, and 2.57%, respectively. A severe form of COVID-19 occurred in 11.8%; dyslipidemia, institutionalization at long-term care facilities, intellectual disability, and older age were associated risk factors. Older age, hypertension, dyslipidemia, cardiac disease, and institutionalization were associated with mortality from COVID-19. Seizure control was stable in 90.1% of PWE during acute COVID-19, while 8.6% reported an increase in seizure frequency. During post-COVID-19 follow-up, 4.6% reported seizure control worsening. Conclusions COVID-19 was moderately prevalent in PWE. One out of 5 patients required medical attention and 4.6% died due to COVID-19. Older age, dyslipidemia, institutionalization, and intellectual disability were significant risk factors associated with severe COVID-19. Seizure control remained stable during COVID-19 and throughout long-term follow-up in most PWE who contracted the infection.