对于国际注册局的Pyoderma Gangrenosum治疗有效性的最低数据集:一个国际多学科eDelphi共识
Olivia M Haddadin1, Michael E Jacobson1,2, Sarah L Becker1
1School of Medicine, Oregon Health and Science University, Portland, Oregon, USA.
The British journal of dermatology
|March 5, 2026
概括
一个基于共识的最低数据集被开发为pyoderma gangrenosum (PG) 登记册. 这种标准化框架将改善这种罕见疾病的证据生成和患者护理.
科学领域:
- 皮肤病学 皮肤病学
- 临床研究方法论 临床研究方法论
- 医疗信息学 医疗信息学
背景情况:
- 皮肤病 (Pyoderma gangrenosum,简称PG) 是一种罕见的,痛苦的中性恋性皮肤病,对生活质量产生重大影响.
- 有限的批准疗法,小型临床试验和低质量的证据阻碍了PG管理.
- 患者数据注册表对于改善PG等罕见疾病的证据生成和临床护理至关重要.
研究的目的:
- 建立一个基于共识的最低数据集,用于国际皮皮性性 (PG) 治疗有效性注册.
- 利用现实世界的临床数据来为这个标准化注册表的开发提供信息.
主要方法:
- 一个系统的文献审查产生了最初的候选数据项.
- 采用了经过修改的Delphi调查过程,涉及一个多利益相关方的国际小组 (45名参与者).
- 通过三个Delphi轮和一个虚拟的共识会议达成共识,随后进行了验证调查.
主要成果:
- 所有45个利益相关者完成了德尔菲轮,在随后的共识和验证步骤中参与度很高.
- 在24个领域的143个初始项目中,26个领域的118个项目达到了共识.
- 该研究成功地建立了PG注册表的全面最低数据集.
结论:
- 一个国际共识已经定义了一个标准化的框架,用于收集真实世界的数据 pyoderma gangrenosum (PG).
- 开发的注册表将对评估治疗有效性,了解疾病进展和改善患者的治疗结果至关重要.
- 这一资源将支持未来的临床试验,指导方针开发和PG的质量改进计划.
相关概念视频
Acute Pyelonephritis II: Diagnostic Studies and Management
542
Introduction:For diagnosing acute pyelonephritis, a comprehensive patient history is collected to identify symptoms such as dysuria, frequent or urgent urination, flank pain, or costovertebral angle (CVA) tenderness that may suggest a kidney infection.Physical ExaminationDuring the physical examination, CVA tenderness is assessed. This involves gentle percussion over the costovertebral angle, where tenderness often indicates a kidney infection.Diagnostic TestsUrinalysis: Used to identify white...
542
Gastritis III: Clinical Manifestations and Management
1.5K
The clinical manifestations of gastritis can vary depending on the cause and type of gastritis, but some common symptoms may include the following.
Clinical manifestations of acute gastritis
The patient with acute gastritis may have a rapid onset of symptoms, such as epigastric pain or discomfort, dyspepsia, anorexia, hiccups, or nausea and vomiting, which can last from a few hours to a few days. Erosive or hemorrhagic gastritis may cause bleeding, which may manifest as blood in vomit or as...
Clinical manifestations of acute gastritis
The patient with acute gastritis may have a rapid onset of symptoms, such as epigastric pain or discomfort, dyspepsia, anorexia, hiccups, or nausea and vomiting, which can last from a few hours to a few days. Erosive or hemorrhagic gastritis may cause bleeding, which may manifest as blood in vomit or as...
1.5K
Peptic Ulcer Disease IV: Management
592
Medical treatment strategies for peptic ulcers encompass various methods. The primary goal of treatment is to diminish gastric acidity and strengthen mucosal defense mechanisms.
The therapeutic approach involves ensuring adequate rest, implementing drug therapy, promoting smoking cessation, making dietary modifications, and emphasizing long-term follow-up care.
Pharmacological management
The prevailing therapy for peptic ulcers involves a combination of managing the patient's current...
The therapeutic approach involves ensuring adequate rest, implementing drug therapy, promoting smoking cessation, making dietary modifications, and emphasizing long-term follow-up care.
Pharmacological management
The prevailing therapy for peptic ulcers involves a combination of managing the patient's current...
592
Peripheral Artery Disease III: Interprofessional Care
457
Peripheral Artery Disease (PAD) is characterized by narrowed arteries that diminish blood flow to the extremities. Effective management of PAD requires an interprofessional approach involving various healthcare professionals. The critical aspects of interprofessional care for PAD patients focus on risk factor modification, drug therapy, exercise therapy, nutrition therapy, critical limb ischemia care, and interventional radiology and surgical procedures.The primary treatment goal for PAD...
457
Rheumatic Heart Disease III: Medical Management
434
Rheumatic heart disease (RHD) management can be divided into two main strategies: prevention and long-term management.Primary PreventionPrimary prevention focuses on timely diagnosis and management of group A streptococcal pharyngitis to prevent acute rheumatic fever. The most widely used antibiotic for treating this condition is intramuscular benzathine penicillin G.Acute Rheumatic Fever TreatmentThe primary treatment goal for a patient diagnosed with acute rheumatic fever is to suppress the...
434
Chronic Pancreatitis II: Collaborative Care
447
The management of chronic pancreatitis is multifaceted, involving a comprehensive approach that includes thorough assessment, diagnostic testing, and a variety of management strategies.
Assessment:
Assessment:
447


