National Study of Adrenal Tumours
试验速览
- 阶段
- 不适用
- 状态
- Enrolling By Invitation
- 发起方
- 入组人数
- 300
- 试验地点
- 1
- 主要终点
- review outcome data and calculate median overall survival for patients with metastatic pheochromocytoma and paraganglioma (PPGL) and adrenocortical carcinoma (ACC) using existing standard of are therapies over the past 10 years
研究概览
简要总结
This is a study putting together large numbers of patients with or without a hereditary risk of adrenal tumours including tumours such as adrenocortical carcinoma and phaeochromocytoma/paraganglioma. The purpose is to answer questions about the survival of patients with these rare tumours and to do this, we will collect information on diagnosis and management of these tumours. This data will be best assessed by combing these rare cases at a national level recruiting from centres throughout UK and Ireland. The information will be confidential and stored in a secure platform.
Patients will be approached for consent to gather their data by their local consultants and patients will have the choice to participate or decline participation, which will not affect their standard of care treatment.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Retrospective
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
- •Patients with a confirmed diagnosis of phaeochromocytoma or paraganglioma or adrenocortical tumour based on histology and or biochemical testing including plasma or urine metanephrine's or a urine steroid profile and confirmatory imaging tests or patients with a confirmed pathogenic variant in a known PPGL predisposition gene
- •Patient is willing and able to give informed consent for the participation in the study.
- •Male or female, and over the age of
- •Patient, in the investigator's opinion, is able and willing to comply with all the study requirements.
- •Patients held on local hospital audit notes who have had a diagnosis of phaeochromocytoma or paraganglioma or adrenocortical tumour based on histology and or biochemical testing including plasma or urine metanephrine's or a urine steroid profile and confirmatory imaging tests or patients with a confirmed pathogenic variant in a known PPGL predisposition gene who are now deceased and have been deceased prior to the start of the study.
排除标准
- •Alive patients unable to give informed consent will not be recruited
- •Patients with an unconfirmed diagnosis of phaeochromocytoma or paraganglioma or adrenocortical tumour based on histology and or biochemical testing including plasma or urine metanephrine's or a urine steroid profile and confirmatory imaging tests or patients with unconfirmed pathogenic variant in a known PPGL predisposition gene
结局指标
主要结局
review outcome data and calculate median overall survival for patients with metastatic pheochromocytoma and paraganglioma (PPGL) and adrenocortical carcinoma (ACC) using existing standard of are therapies over the past 10 years
时间窗: 10 years
Primary aims: i) identify the clinical need within the UK, ii) review outcome data and calculate median overall survival for patients with metastatic pheochromocytoma and paraganglioma (PPGL) and adrenocortical carcinoma (ACC) using existing standard of care therapies over the past 10 years
次要结局
未报告次要终点