Study and Management of Cystic Complications in Autosomal Dominant Polycystic Kidney Disease
试验速览
- 阶段
- 不适用
- 状态
- 进行中（未招募）
- 入组人数
- 600
- 试验地点
- 1
- 主要终点
- To improve knowledge of the epidemiology of cystic complications within the Genkyst network
研究概览
简要总结
Autosomal dominant polycystic kidney disease is characterised by the development of renal and hepatic cysts. While the main complication is chronic end-stage renal failure, specific cyst-related complications are common: intracystic haemorrhage, renal or hepatic cyst infections, cyst-related mechanical complications and lithiasis. To date, there is no reliable epidemiological data on the frequency and clinical impact of these complications. Diagnosis of these complications is often complicated, and their management has not been codified. The latest international recommendations (KDIGO) provide only low-level recommendations. For the most complex cases (recurrent cystic infections, resistant pain, mechanical complications and malnutrition, need for pre-transplant nephrectomy, etc.), practitioners are often at a loss and management varies greatly from one centre to another.
详细描述
Autosomal dominant polycystic kidney disease is characterised by the development of renal and hepatic cysts. While the main complication is chronic end-stage renal failure, specific cyst-related complications are common: intracystic haemorrhage, renal or hepatic cyst infections, cyst-related mechanical complications and lithiasis. To date, there is no reliable epidemiological data on the frequency and clinical impact of these complications. Diagnosis of these complications is often complicated, and their management has not been codified. The latest international recommendations (KDIGO) provide only low-level recommendations. For the most complex cases (recurrent cystic infections, resistant pain, mechanical complications and malnutrition, need for pre-transplant nephrectomy, etc.), practitioners are often at a loss and management varies greatly from one centre to another.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Patient with autosomal dominant polycystic kidney disease (APKD) participating in the Genkyst study
- •Patient with at least one cystic complication. The cystic complications retained are the following:
- •Acute or chronic cyst-related pain requiring analgesic treatments
- •Cyst infection
- •Intracystic haemorrhage
- •Urinary lithiasis
- •Functional complaints related to the cystic mass: digestive disorders with eating disorders, undernutrition, diaphragmatic compression phenomena, portal hypertension, umbilical or linea alba hernias, ventrations
- •Need for a cystic reduction procedure: puncture, marsupialization, open surgery (including preparation for grafting)
排除标准
- •Patients who have expressed their opposition to taking part in the study
- •Patient under legal protection (guardianship, curatorship, etc.)
结局指标
主要结局
To improve knowledge of the epidemiology of cystic complications within the Genkyst network
时间窗: 12 months
number of cases of cystic complications per year per complication
次要结局
- Creation of a specific multidisciplinary consultation meeting(12 months)
- Creation of an image bank(12 months)
- Creation of a group of control patients(12 months)