Consensus conference

协商一致会议
  • 文章类型: English Abstract
    目的:乳腺癌手术标准共识会议旨在通过解决临床实践中与乳腺癌手术相关的争议和手术问题,建立行业技术标准并改善乳腺癌手术实践。会议由广东省医疗工业协会(GMIA)乳腺肿瘤及重建分会牵头,85名具有乳腺癌保存专业知识的乳腺外科医师参加,致癌塑料,重建手术.通过3次会议达成了共识。第一次会议提出了感兴趣的话题,并提交了证据摘要供第二次会议辩论;举行了第三次会议,以就选定的主题达成共识建议。预定义的共识标准要求只有在超过70%的小组成员就该主题达成共识时才达成共识。在准备投票的57个问题中,11个手术标准被推荐为首选,一个被推荐为考虑。首选手术标准包括保乳手术的手术细节,乳房切除术,重建手术,叶状肿瘤的手术治疗。还讨论了小组成员之间未达成共识的选定主题。这些首选的手术标准可以帮助指导常规患者护理中的临床手术实践。
    OBJECTIVE: The Breast Cancer Surgery Operative Standards Consensus Conference aimed to establish industry technical standards and improve breast cancer surgery practices by addressing controversial and operative breast cancer surgery-related issues in clinical practice.The conference was led by the Breast Oncoplastic and Reconstruction Branch of Guangdong Medical Industry Association (GMIA) and involved 85 breast surgeons with expertise in breast cancer conserving, oncoplastic, and reconstructive surgery.Consensus was reached through 3 meetings.The first meeting brought up the topics of interest, and evidence summaries were presented for debate during the second meeting; the third meeting was held to reach consensus recommendation for selected topics.Pre-defined consensus criteria required that the consensus was reached only when more than 70% of the panelists agreed on the topic.Out of the 57 questions set for voting, 11 operative standards were recommended as Preferred, and one was recommended as Considered.Preferred operative standards included surgical details in breast conserving surgery, mastectomy, reconstructive surgery, surgical treatment of phyllodes tumor.Selected topics that did not reach consensus among the panelists were also discussed.These Preferred operative standards could help guide clinical surgical practice in routine patient care.
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  • 文章类型: Journal Article
    UNASSIGNED: To date, there is a lack of published information on the utilization of the Deliberative dialogue methodology and the right to a dignified death in minors under 18 years of age in Colombia and Latin America.
    UNASSIGNED: To examine the issue of children and adolescents\' entitlement to a dignified death, including the criteria for exclusion, and to formulate a comprehensive plan for pediatric palliative care. A public policy document will be created with the aim of supporting the implementation of Resolution 825/2018.
    UNASSIGNED: Participatory Action Research utilizing a Deliberative dialogue methods that has been adapted based on feminist epistemological principles.
    UNASSIGNED: The outcome of the exercise was the production of a document containing Public Policy recommendations regarding euthanasia in minors and its submission to the Ministry of Health and Social Protection of Colombia a few days prior to the release of the Resolution regulating the right to a dignified death for this population. Additionally, the conclusions of this event enabled the creation of a guide for the implementation of (Cabildos Ciudadanos) Citizen Council, in which girls, boys, and adolescents are included, trans-disciplinarity is encouraged, and feminist epistemological foundations are explored.
    UNASSIGNED: The deliberative dialogue method may serve as a cost-efficient alternative to replace or complement participatory approaches utilized in the development of public health guidelines and policies.
    UNASSIGNED: En Colombia y Latinoamérica no se cuenta con registros publicados de temas abordados desde los metodos del diálogo deliberativo frente a temas de salud sobre la población pediátrica.
    UNASSIGNED: El diálogo deliberativo fue utilizado para deliberar sobre el derecho a la muerte digna en niñas, niños y adolescentes, sus criterios de exclusión, y el marco de acción de los cuidados paliativos pediátricos.
    UNASSIGNED: Investigación acción participativa recurriendo a la metodología Deliberative Poll.
    UNASSIGNED: Redacción de un documento de recomendaciones de Política Pública en torno a la eutanasia en población pediátrica y entrega del mismo al Ministerio de Salud y Protección Social de Colombia días previos a la expedición de la Resolución que reglamentó el derecho a morir con dignidad para esta población; así mismo, las conclusiones de este ejercicio posibilitaron la estructuración de una guía metodológica para la realización de Cabildos Ciudadanos en donde se integra a niñas, niños y adolescentes.
    UNASSIGNED: el diálogo deliberativo puede constituirse en una alternativa costo-eficiente para reemplazar o complementar metodologías de participación empleadas en la construcción de lineamientos y políticas públicas en salud.
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  • 文章类型: Review
    欧洲器官移植学会(ESOT)创建了一个平台,用于开发严格且定期更新的基于证据的移植领域临床实践指南。一个专门的指导方针工作组,包括ESOT理事会成员,移植证据中心的代表,《移植国际》杂志的编辑制定了透明的程序来指导准则的制定,recommendations,共识声明。在2022年11月举行的ESOT第一次共识会议期间,领先的专家将对九个主题进行深入的基于证据的审查,并将在公开讨论和独立陪审团评估后提出旨在达成共识的建议。将发布针对九个选定主题的所有建议和共识声明,包括整个基于证据的共识发现过程。对每个主题进行了广泛的文献综述,以提供最终证据和/或专家意见。
    The European Society for Organ Transplantation (ESOT) has created a platform for the development of rigorous and regularly updated evidence based guidelines for clinical practice in the transplantation field. A dedicated Guideline Taskforce, including ESOT-council members, a representative from the Centre for Evidence in Transplantation, editors of the journal Transplant International has developed transparent procedures to guide the development of guidelines, recommendations, and consensus statements. During ESOT\'s first Consensus Conference in November 2022, leading experts will present in-depth evidence based reviews of nine themes and will propose recommendations aimed at reaching a consensus after public discussion and assessment by an independent jury. All recommendations and consensus statements produced for the nine selected topics will be published including the entire evidence-based consensus-finding process. An extensive literature review of each topic was conducted to provide final evidence and/or expert opinion.
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  • 文章类型: Journal Article
    Placenta accreta spectrum (PAS) is a condition associated with massive postpartum bleeding and maternal mortality. Management guidelines published in high income countries recommend the participation of interdisciplinary teams in hospitals with sufficient resources for performing complex procedures. However, some of the recommendations contained in those guidelines are difficult to implement in low and medium income countries.
    The aim of this consensus is to draft general recommendations for the treatment of PAS in Colombia.
    Twenty-three panelists took part in the consensus with their answers to 31 questions related to the treatment of PAS. The panelists were selected based on participation in two surveys designed to determine the resolution capabilities of national and regional hospitals. The modified Delphi methodology was used, introducing two successive discussion rounds. The opinions of the participants, with a consensus of more than 80%, as well as implementation barriers and facilitators, were taken into consideration in order to issue the recommendations.
    The consensus draftedfive recommendations, integrating the answers of the panelists. Recommendation 1. Primary care institutions must undertake active search of PAS in patients with risk factors: placenta praevia and history of myomectomy or previous cesarean section. In case of ultrasound signs suggesting PAS, patients must be immediately referred, without a minimum gestational age, to hospitals recognized as referral centers. Online communication and care modalities may facilitate the interaction between primary care institutions and referral centers for PAS. The risks and benefits of telemedicine modalities must be weighed. Recommendation 2. Referral hospitals for PAS need to be defined in each region of Colombia, ensuring coverage throughout the national territory. It is advisable to concentrate the flow of patients affected by this condition in a few hospitals with surgical teams specifically trained in PAS, availability of specialized resources, and institutional efforts at improving quality of care with the aim of achieving better health outcomes in pregnant women with this condition. To achieve this goal, participants recommend that healthcare regulatory agencies at a national and regional level should oversee the process of referral for these patients, expediting administrative pathways in those cases in which there is no prior agreement between the insurer and the selected hospital or clinic. Recommendation 3. Referral centers for patients with PAS are urged to build teams consisting of a fixed group of specialists (obstetricians, urologists, general surgeons, interventional radiologists) entrusted with the care of all PAS cases. It is advisable for these interdisciplinary teams to use the “intervention bundle” model as a guidance for building PAS referral centers. This model comprises the following activities: service preparedness, disease prevention and identification, response to the occurrence of the disease, and debriefing after every event. Telemedicine facilitates PAS treatment and should be taken into consideration by interdisciplinary teams caring for this disease. Recommendation 4. Obstetrics residents must be instructed in the performance of maneuvers that are useful for the prevention and treatment of massive intraoperative bleeding due to placenta praevia and PAS, including manual aortic compression, uterine tourniquet, pelvic packing, retrovesical bypass, and Ward maneuver. Specialization Obstetrics and Gynecology programs in Colombia must include the basic concepts of the diagnosis and treatment of PAS. Referral centers for PAS must offer online and in-person training programs for professionals interested in improving their competencies in PAS. Moreover, they must offer permanent remote support (telemedicine) to other hospitals in their region for patients with this condition. Recommendation 5. Patients suspected of having PAS and placenta praevia based on imaging, with no evidence of active vaginal bleeding, must be delivered between weeks 34 and 36 6/7. Surgical treatment must include sequential interventions that may vary depending on the characteristics of the lesion, the clinical condition of the patient and the availability of resources. The surgical options (total and subtotal hysterectomy, one-stage conservative surgical management and watchful waiting) must be included in a protocol known by the entire interdisciplinary team. In situations in which an antepartum diagnosis is lacking, that is to say, in the face of intraoperative finding of PAS (evidence of purple bulging or neovascularization of the anterior aspect of the uterus), and the participation of untrained personnel, three options are considered: Option 1: In the absence of indication of immediate delivery or of vaginal delivery, the recommendation is to postpone the cesarean section (close the laparotomy before incising the uterus) until the recommended resources for safe surgery are secured. Option 2: If there is an indication for immediate delivery (e.g., non-reassuring fetal status) but there is absence of vaginal bleeding or indication for immediate PAS management, a two-stage management is suggested: cesarean section avoiding placental incision, followed by uterine repair and abdominal closure, until the availability of the recommended resources for safe surgery is ascertained. Option 3: In the event of vaginal bleeding that prevents definitive PAS management, the fetus must be delivered through the uterine fundus, followed by uterine repair and reassessment of the situation. Sometimes, fetal delivery diminishes placental flow and vaginal bleeding is reduced or disappears, enabling the possibility to postpone definitive management of PAS. In case of persistent significant bleeding, hysterectomy should be performed, using all available resources: manual aortic compression, immediate call to the surgeons with the best available training, telemedicine support from expert teams in other hospitals. If a patient with risk factors for PAS (e.g., myomectomy or previous cesarean section) has a retained placenta after vaginal delivery, it is advisable to confirm the possibility of such diagnosis (by means of ultrasound, for example) before proceeding to manual extraction of the placenta.
    It is our hope that this first Colombian consensus on PAS will serve as a basis for additional discussions and collaborations that can result in improved clinical outcomes for women affected by this condition. Additional research will be required in order to evaluate the applicability and effectiveness of these recommendations.
    el espectro de acretismo placentario (EAP) es una condición asociada a sangrado masivo posparto y mortalidad materna. Las guías de manejo publicadas en países de altos ingresos recomiendan la participación de grupos interdisciplinarios en hospitales con recursos suficientes para realizar procedimientos complejos. Sin embargo, algunas de las recomendaciones de estas guías resultan difíciles de aplicar en países de bajos y medianos ingresos.
    este consenso busca formular recomendaciones generales para el tratamiento del EAP en Colombia.
    en el consenso participaron 23 panelistas, quienes respondieron 31 preguntas sobre el tratamiento de EAP. Los panelistas fueron seleccionados con base en la participación en dos encuestas realizadas para determinar la capacidad resolutiva de hospitales en el país y la región. Se utilizó la metodología Delphi modificada, incorporando dos rondas sucesivas de discusión. Para emitir las recomendaciones el grupo tomó en cuenta la opinión de los participantes, que lograron un consenso mayor al 80 %, así como las barreras y los facilitadores para su implementación.
    el consenso formuló cinco recomendaciones integrando las respuestas de los panelistas. Recomendación 1. Las instituciones de atención primaria deben realizar búsqueda activa de EAP en pacientes con factores de riesgo: placenta previa e historia de miomectomía o cesárea en embarazo previo. En caso de haber signos sugestivos de EAP por ecografía, las pacientes deben ser remitidas de manera inmediata, sin tener una edad gestacional mínima, a hospitales reconocidos como centros de referencia. Las modalidades virtuales de comunicación y atención en salud pueden facilitar la interacción entre las instituciones de atención primaria y los centros de referencia para EAP. Se debe evaluar el beneficio y riesgo de las modalidades de telemedicina. Recomendación 2. Es necesario que se definan hospitales de referencia para EAP en cada región de Colombia, asegurando el cubrimiento de la totalidad del territorio nacional. Es aconsejable concentrar el flujo de pacientes afectadas por esta condición en unos pocos hospitales, donde haya equipos de cirujanos con entrenamiento específico en EAP, disponibilidad de recursos especializados y un esfuerzo institucional por mejorar la calidad de atención, en busca de tener mejores resultados en la salud de las gestantes con esta condición. Para lograr ese objetivo los participantes recomiendan que los entes reguladores de la prestación de servicios de salud a nivel nacional, regional o local vigilen el proceso de remisión de estas pacientes, facilitando rutas administrativas en caso de que no exista contrato previo entre el asegurador y el hospital o la clínica seleccionada (IPS). Recomendación 3. En los centros de referencia para pacientes con EAP se invita a la creación de equipos que incorporen un grupo fijo de especialistas (obstetras, urólogos, cirujanos generales, radiólogos intervencionistas) encargados de atender todos los casos de EAP. Es recomendable que esos grupos interdisciplinarios utilicen el modelo de “paquete de intervención” como guía para la preparación de los centros de referencia para EAP. Este modelo consta de las siguientes actividades: preparación de los servicios, prevención e identificación de la enfermedad, respuesta ante la presentación de la enfermedad, aprendizaje luego de cada evento. La telemedicina facilita el tratamiento de EAP y debe ser tenida en cuenta por los grupos interdisciplinarios que atienden esta enfermedad. Recomendación 4. Los residentes de Obstetricia deben recibir instrucción en maniobras útiles para la prevención y el tratamiento del sangrado intraoperatorio masivo por placenta previa y EAP, tales como: la compresión manual de la aorta, el torniquete uterino, el empaquetamiento pélvico, el bypass retrovesical y la maniobra de Ward. Los conceptos básicos de diagnóstico y tratamiento de EAP deben incluirse en los programas de especialización en Ginecología y Obstetricia en Colombia. En los centros de referencia del EAP se deben ofrecer programas de entrenamiento a los profesionales interesados en mejorar sus competencias en EAP de manera presencial y virtual. Además, deben ofrecer soporte asistencial remoto (telemedicina) permanente a los demás hospitales en su región, en relación con pacientes con esa enfermedad. Recomendación 5. La finalización de la gestación en pacientes con sospecha de EAP y placenta previa, por imágenes diagnósticas, sin evidencia de sangrado vaginal activo, debe llevarse a cabo entre las semanas 34 y 36 6/7. El tratamiento quirúrgico debe incluir intervenciones secuenciales que pueden variar según las características de la lesión, la situación clínica de la paciente y los recursos disponibles. Las opciones quirúrgicas (histerectomía total y subtotal, manejo quirúrgico conservador en un paso y manejo expectante) deben incluirse en un protocolo conocido por todo el equipo interdisciplinario. En escenarios sin diagnóstico anteparto, es decir, ante un hallazgo intraoperatorio de EAP (evidencia de abultamiento violáceo o neovascularización de la cara anterior del útero), y con participación de personal no entrenado, se plantean tres situaciones: Primera opción: en ausencia de indicación de nacimiento inmediato o sangrado vaginal, se recomienda diferir la cesárea (cerrar la laparotomía antes de incidir el útero) hasta asegurar la disponibilidad de los recursos recomendados para llevar a cabo una cirugía segura. Segunda opción: ante indicación de nacimiento inmediato (por ejemplo, estado fetal no tranquilizador), pero sin sangrado vaginal o indicación de manejo inmediato de EAP, se sugiere realizar manejo en dos tiempos: se realiza la cesárea evitando incidir la placenta, seguida de histerorrafia y cierre de abdomen, hasta asegurar la disponibilidad de los recursos recomendados para llevar a cabo una cirugía segura. Tercera opción: en presencia de sangrado vaginal que hace imposible diferir el manejo definitivo de EAP, es necesario extraer el feto por el fondo del útero, realizar la histerorrafia y reevaluar. En ocasiones, el nacimiento del feto disminuye el flujo placentario y el sangrado vaginal se reduce o desaparece, lo que hace posible diferir el manejo definitivo de EAP. Si el sangrado significativo persiste, es necesario continuar con la histerectomía haciendo uso de los recursos disponibles: compresión manual de la aorta, llamado inmediato a los cirujanos con mejor entrenamiento disponible, soporte de grupos expertos de otros hospitales a través de telemedicina. Si una paciente con factores de riesgo para EAP (por ejemplo, miomectomía o cesárea previa) presenta retención de placenta posterior al parto vaginal, es recomendable confirmar la posibilidad de dicho diagnóstico (por ejemplo, realizando una ecografía) antes de intentar la extracción manual de la placenta.
    esperamos que este primer consenso colombiano de EAP sirva como base para discusiones adicionales y trabajos colaborativos que mejoren los resultados clínicos de las mujeres afectadas por esta enfermedad. Evaluar la aplicabilidad y efectividad de las recomendaciones emitidas requerirá investigaciones adicionales.
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  • 文章类型: Journal Article
    牛皮癣是一种复杂的疾病,通常需要多学科的方法。特别是,皮肤科医生和风湿病学家之间的合作对于治疗患有银屑病(PSO)和银屑病关节炎(PsA)的患者至关重要。在这里,我们报告了一组专家的一系列建议,作为共识会议的结果,定义优选甚至强制性的情况,根据可用的设置,依靠两位专家的意见,共同或以延期的方式。关于如何组织三级联合皮肤病-风湿病护理单元的适应症。关于这两个专业的一级和二级临床医生,GP,和其他专家参与牛皮癣的管理。建议进行潜在的患者旅程,可以用作未来设计和验证国家和/或地方诊断治疗和辅助途径的基础。
    Psoriasis is a complex disease often needing a multidisciplinary approach. In particular, the collaboration between dermatologist and rheumatologist is crucial for the management of patients suffering from both psoriasis (PSO) and psoriatic arthritis (PsA). Here we report a series of recommendations from a group of experts, as a result of a Consensus Conference, defining the circumstances in which it is preferable or even mandatory, depending on the available settings, to rely on the opinion of the two specialists, jointly or in a deferred manner. Indications are given on how to organize a 3rd level joint Dermatology- Rheumatology care unit, in connection with 1st and 2nd level clinicians of both specialties, GPs, and other specialists involved in the management of psoriasis. A potential patient journey is suggested, that can be used as a basis for future design and validation of national and/or local diagnostic therapeutic and assistance pathways.
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  • 文章类型: Systematic Review
    本文基于第四届匈牙利乳腺癌共识会议接受的建议,在中东欧肿瘤学会框架内的国际磋商和会议的基础上进行了修改。这些建议涵盖了非手术者,术中和术后诊断,预后和预测标志物的确定以及细胞学和组织学报告的内容。此外,它们解决了一些具体问题,例如多基因分子标记的现状,病理学家在临床试验中的作用及其参与的先决条件,和一些关于未来的评论。
    This text is based on the recommendations accepted by the 4th Hungarian Consensus Conference on Breast Cancer, modified on the basis of the international consultation and conference within the frames of the Central-Eastern European Academy of Oncology. The recommendations cover non-operative, intraoperative and postoperative diagnostics, determination of prognostic and predictive markers and the content of cytology and histology reports. Furthermore, they address some specific issues such as the current status of multigene molecular markers, the role of pathologists in clinical trials and prerequisites for their involvement, and some remarks about the future.
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  • 文章类型: Journal Article
    The findings and recommendations of the 2019 consensus conference in organ donation, held in Kunming, China, are here reported. The main objective of the conference was to gather relevant information from experts involved in the field. The data and opinions provided allowed to propose a series of recommendations for \"One Belt & One Road Countries\" on how to achieve self-sufficiency in organ donation. Leadership in organ donation should be results-oriented and goal-driven based on the principles of excellence, empowerment, and engagement, providing the means, resources, and strategies necessary to reach the goal in earnest. Management includes good governance and transparency of a national registry of patients in the waiting list, donors, transplants, transplant teams, quality, and safety programs with continuous educational training of health care professionals. Mandatory monitoring, auditing and evaluation of quality must be incorporated into donation practices as relevant points in innovation, as well as the adoption of already established and novel processes and technologies. Achievement of self-sufficiency in organ donation is a crucial step to fight against transplant tourism and to prevent organ trafficking. Based on recommendations arising from the conference, each country could review and develop individualized action plans adjusted to its own circumstances and reality.
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  • 文章类型: Journal Article
    随着电子健康记录(EHR)的使用增加并造成意外的负面后果,医学抄写员职业蓬勃发展,但它还没有得到监管。这项研究的目的是描述抄写工作流程,并确定抄写行业未来的威胁和机会。
    研究的第一阶段使用了人种学方法,包括在美国五个地点的多学科研究人员团队的访谈和观察。2019年4月,举行了为期两天的代表不同利益相关者观点的专家会议,讨论了实地考察的结果,并预测了医疗划线的未来。使用解释性内容分析方法来发现医学抄写员未来的威胁和机会。
    医疗抄写员行业面临的威胁与文档模型的变化有关,EHR可用性,不同的支付结构,在临床接触期间需要获取不同的数据,以及与划线模型相关的劳动力相关的变化。同时,未来的医疗记录机会包括将其角色扩展到包括工作流分析,担任EHR相关主题专家,并更有效地融入临床护理交付团队。专家认为,如果EHR可用性增加,对医学抄写员的需求可能会减少。此外,可以扩展抄写员角色,以允许抄写员记录更多或承担更多与信息学相关的任务。专家们还预计会增加使用替代的划线模型,比如远程抄写.
    确定了医疗划片的威胁和机会。许多专家认为,如果可以扩大抄写员的角色,以允许抄写员记录更多或从事更多的信息学活动,这将是有益的。随着COVID-19继续改变工作流程,随着远程抄写越来越受欢迎,随着医疗团队成员的确定,抄写员必须接受标准化培训。
    With the use of electronic health records (EHRs) increasing and causing unintended negative consequences, the medical scribe profession has burgeoned, but it has yet to be regulated. The purpose of this study was to describe scribe workflow as well as identify the threats and opportunities for the future of the scribe industry.
    The first phase of the study used ethnographic methods consisting of interviews and observations by a multi-disciplinary team of researchers at five United States sites. In April 2019, a two-day conference of experts representing different stakeholder perspectives was held to discuss the results from site visits and to predict the future of medical scribing. An interpretive content analysis approach was used to discover threats and opportunities for the future of medical scribes.
    Threats facing the medical scribe industry were related to changes in the documentation model, EHR usability, different payment structures, the need to acquire disparate data during clinical encounters, and workforce-related changes relevant to the scribing model. Simultaneously, opportunities for medical scribing in the future included extension of their role to include workflow analysis, acting as EHR-related subject-matter-experts, and becoming integrated more effectively into the clinical care delivery team. Experts thought that if EHR usability increases, the need for medical scribes might decrease. Additionally, the scribe role could be expanded to allow scribes to document more or take on more informatics-related tasks. The experts also anticipated an increased use of alternative models of scribing, like tele-scribing.
    Threats and opportunities for medical scribing were identified. Many experts thought that if the scribe role could be expanded to allow scribes to document more or take on more informatics activities, it would be beneficial. With COVID-19 continuing to change workflows, it is critical that medical scribes receive standardized training as tele-scribing continues to grow in popularity and new roles for scribes as medical team members are identified.
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  • 文章类型: Journal Article
    Mitochondrial neurogastrointestinal encephalomyopathy (MNGIE) is a rare autosomal recessive disease caused by TYMP mutations and thymidine phosphorylase (TP) deficiency. Thymidine and deoxyuridine accumulate impairing the mitochondrial DNA maintenance and integrity. Clinically, patients show severe and progressive gastrointestinal and neurological manifestations. The onset typically occurs in the second decade of life and mean age at death is 37 years. Signs and symptoms of MNGIE are heterogeneous and confirmatory diagnostic tests are not routinely performed by most laboratories, accounting for common misdiagnosis. Factors predictive of progression and appropriate tests for monitoring are still undefined. Several treatment options showed promising results in restoring the biochemical imbalance of MNGIE. The lack of controlled studies with appropriate follow-up accounts for the limited evidence informing diagnostic and therapeutic choices. The International Consensus Conference (ICC) on MNGIE, held in Bologna, Italy, on 30 March to 31 March 2019, aimed at an evidence-based consensus on diagnosis, prognosis, and treatment of MNGIE among experts, patients, caregivers and other stakeholders involved in caring the condition. The conference was conducted according to the National Institute of Health Consensus Conference methodology. A consensus development panel formulated a set of statements and proposed a research agenda. Specifically, the ICC produced recommendations on: (a) diagnostic pathway; (b) prognosis and the main predictors of disease progression; (c) efficacy and safety of treatments; and (f) research priorities on diagnosis, prognosis, and treatment. The Bologna ICC on diagnosis, management and treatment of MNGIE provided evidence-based guidance for clinicians incorporating patients\' values and preferences.
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  • 文章类型: Consensus Development Conference
    The omission of outcomes that are of relevance to patients, clinicians, and regulators across trials in autosomal dominant polycystic kidney disease (ADPKD) limits shared decision making. The Standardized Outcomes in Nephrology-Polycystic Kidney Disease (SONG-PKD) Initiative convened an international consensus workshop on October 25, 2018, to discuss the identification and implementation of a potential core outcome set for all ADPKD trials. This article summarizes the discussion from the workshops and the SONG-PKD core outcome set. Key stakeholders including 11 patients/caregivers and 47 health professionals (nephrologists, policy makers, industry, and researchers) attended the workshop. Four themes emerged: \"Relevance of trajectory and impact of kidney function\" included concerns about a patient\'s prognosis and uncertainty of when they may need to commence kidney replacement therapy and the lack of an early prognostic marker to inform long-term decisions; \"Discerning and defining pain specific to ADPKD\" highlighted the challenges in determining the origin of pain, adapting to the chronicity and repeated episodes of pain, the need to place emphasis on pain management, and to have a validated measure for pain; \"Highlighting ADPKD consequences\" encompassed cyst-related complications and reflected patient\'s knowledge because of family history and the hereditary nature of ADPKD; and \"Risk for life-threatening but rare consequences\" such as cerebral aneurysm meant considering both frequency and severity of the outcome. Kidney function, mortality, cardiovascular disease, and pain were established as the core outcomes for ADPKD.
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