Browsing by Author "Nahuelhual, Paula"
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Item 3D-printed hand prostheses function in adolescents with congenital hand amputation: a case series(2020) Dote, Jacqueline; Nahuelhual, Paula; Cubillos, Rodrigo; Fuentes, Gabriel; Zuniga, JorgeObjective: To describe the effect of the 3D-printed Cyborg Beast prosthesis on upper limbs function in adolescents with congenital hand amputation. Clinical Cases: Five patients aged between 12 and 17 years, with congenital hand amputation were selected. All patients were from the Teletón Institute in Santiago, Chile. The patients were trained for prosthesis use in four sessions. Hand function was evaluated without prosthesis, at 1 and 4 months of use with the modified Bilan 400 points scale, and upper limb function perception was evaluated with the ’Upper Extremity Functional Index (UEFI)’. At 1 month and 4 months of use, the percentage change for hand functionality for the unaffected limbs was between -11% and -4%; and -9% and -2% for the affected limb. The percentage change for the upper limbs perceived function was -62%. Conclusions: The use of the 3D-printed Cyborg Beast prosthesis was not a functional solution for the 5 patients included in this study. Future research is needed to improve the functionality of these types of 3D-printed hand prostheses.Item Funcionalidad de prótesis de mano impresa en 3D en adolescentes con amputación congénita parcial de mano: una serie de casos(2020) Dote, Jacqueline; Nahuelhual, Paula; Cubillos, Rodrigo; Fuentes, Gabriel; Zuniga, JorgeObjetivo: Describir el efecto de la prótesis impresa en 3D Cyborg Beast en la funcionalidad de miembros superiores (MMSS) en adolescentes con amputación congénita parcial de mano. Casos Clínicos: Se seleccionaron 5 pacientes entre 12 y 17 años con amputación congénita parcial de mano en el Instituto Teletón Santiago. Los pacientes fueron entrenados en el uso de la prótesis por 4 sesiones. Se evaluó la función basal (sin prótesis), al mes y los 4 meses de uso de la prótesis con la pauta Bilan 400 points modificada y la percepción de funcionalidad de MMSS sin y con prótesis con la “Upper Extremity Function Index (UEFI)”. Al mes y 4 meses de uso, el porcentaje de cambio para funcionalidad de mano fue de -11% y -4% para la extremidad no afectada y de -9% y -2% para la afectada. El porcentaje de cambio para la percepción de funcionalidad de MMSS fue de -62%. Conclusiones: El uso de la prótesis de mano Cyborg Beast no fue una solución funcional para los 5 pacientes incluidos en este estudio. Futuras investigaciones son necesarias para poder mejorar la funcionalidad de estos diseños de prótesis impresa en tecnología 3D.Publication International Society on Thrombosis and Haemostasis clinical practice guideline for treatment of congenital hemophilia A and B based on the Grading of Recommendations Assessment, Development, and Evaluation methodology(2024) Rezende, Suely; Neumann, Ignacio; Angchaisuksiri, Pantep; Awodu, Omolade; Boban, Ana; Cuker, Adam; Curtin, Julie; Fijnvandraat, Karin; Gouw, Samantha; Gualtierotti, Roberta; Makris, Michael; Nahuelhual, Paula; O'Connell, Niamh; Saxena, Renu; Shima, Midori; Wu, Runhui; Rosendaal, FritsBackground: Hemophilia is a rare congenital bleeding disorder that results from complete or partial deficiency of blood coagulation factor (F)VIII (hemophilia A) or FIX (hemophilia B) due to pathogenic variants in their coding genes. Hemophilia requires complex management. To date, there is no evidence-based clinical practice guideline on hemophilia treatment based on the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) approach. Objectives: This evidence-based clinical practice guideline from the International Society on Thrombosis and Haemostasis aims to provide an overview of evidence and support patients, caregivers, hematologists, pediatricians, other clinicians, researchers, and stakeholders in treatment decisions about congenital hemophilia A and B. Methods: The International Society on Thrombosis and Haemostasis formed a multidisciplinary guideline panel of physicians and patients with global representation, balanced to minimize potential bias from conflicts of interest. The panel prioritized a set of clinical questions and outcomes according to their importance for clinicians and patients. A methodological team supported the guideline development process, including searching for evidence and performing systematic reviews. The GRADE approach was used, including GRADE Evidence to Decision frameworks. The recommendations were subject to public comment. Results: The panel selected 13 questions, of which 11 addressed the treatment of hemophilia A and 2 the treatment of hemophilia B. Specifically, the panel addressed questions on prophylactic and episodic treatment with FVIII concentrates, bypassing agents, and nonfactor therapy (emicizumab) for hemophilia A (with and without inhibitors) as well as immune tolerance induction for hemophilia A. For hemophilia B, the panel addressed questions on prophylactic and episodic treatment of bleeding events with FIX concentrates. Agreement was reached for all 13 recommendations, of which 7 (54%) were based on evidence from randomized clinical trials, 3 (23%) on observational studies, and 3 (23%) on indirect comparisons. Conclusion: Strong recommendations were issued for prophylactic over episodic treatment for severe and moderately severe hemophilia A and B. Only conditional recommendations were issued for the remaining questions. Future research should focus on direct treatment comparisons and the treatment of hemophilia B with and without inhibitors. Future updates of this guideline will provide an updated evidence synthesis on the current questions and focus on new FVIII and FIX concentrates, novel nonfactor therapies, and gene therapy for severe and nonsevere hemophilia A and B.