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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.
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| Measure | Description | Time Frame |
|---|---|---|
| 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 | 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 | 10 years |
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Inclusion Criteria:
Exclusion Criteria:
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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
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Cambridge NHS | Cambridge | UK | United Kingdom |
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| ID | Term |
|---|---|
| D010673 | Pheochromocytoma |
| D010235 | Paraganglioma |
| D000310 | Adrenal Gland Neoplasms |
| ID | Term |
|---|---|
| D018358 | Neuroendocrine Tumors |
| D017599 | Neuroectodermal Tumors |
| D009373 | Neoplasms, Germ Cell and Embryonal |
| D009370 | Neoplasms by Histologic Type |
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| D009369 | Neoplasms |
| D009380 | Neoplasms, Nerve Tissue |
| D004701 | Endocrine Gland Neoplasms |
| D009371 | Neoplasms by Site |
| D000307 | Adrenal Gland Diseases |
| D004700 | Endocrine System Diseases |