What changed: Hereditary pheochromocytoma and paraganglioma (SDHx, VHL, RET, NF1, MAX and TMEM127)
Every dated change on the records linked to Hereditary pheochromocytoma and paraganglioma (SDHx, VHL, RET, NF1, MAX and TMEM127), newest first: approvals and regulatory steps on its medicines, trials that reported, guideline versions, milestones, and when this page itself was checked. Dates come from the records; none is inferred. Orientation, not medical advice.
September 2026 · 1
2025 · 1
2021 · 1
2017 · 1
2014 · 7
- 2014GuidelineHereditary pheochromocytoma and paraganglioma (SDHx, VHL, RET, NF1, MAX and TMEM127)Guideline Endocrine Society clinical practice guideline 2014; NCCN Neuroendocrine and Adrenal Tumors: Adrenal tumours in VHL and MEN2
Alpha-blockade then cortical-sparing (partial) adrenalectomy to preserve adrenal function given the risk of bilateral disease.
- 2014GuidelineHereditary pheochromocytoma and paraganglioma (SDHx, VHL, RET, NF1, MAX and TMEM127)Guideline Endocrine Society clinical practice guideline 2014; NCCN Neuroendocrine and Adrenal Tumors: Advanced disease in carriers
Belzutifan (approved for VHL-associated tumours 2021 and for advanced pheochromocytoma and paraganglioma 2025); lutetium-177 dotatate for somatostatin-receptor-positive disease; see the metastatic record.
- 2014GuidelineHereditary pheochromocytoma and paraganglioma (SDHx, VHL, RET, NF1, MAX and TMEM127)Guideline Endocrine Society clinical practice guideline 2014; NCCN Neuroendocrine and Adrenal Tumors: Biochemical and imaging work-up
Plasma or urinary metanephrines; CT or MRI; 68Ga-DOTATATE PET as the preferred functional scan for SDHx and other cluster 1 disease.
- 2014GuidelineHereditary pheochromocytoma and paraganglioma (SDHx, VHL, RET, NF1, MAX and TMEM127)Guideline Endocrine Society clinical practice guideline 2014; NCCN Neuroendocrine and Adrenal Tumors: Genetic diagnosis
Germline panel testing offered to every patient; SDHB immunohistochemistry on tumour tissue; cascade testing of relatives with genetic counselling.
- 2014GuidelineHereditary pheochromocytoma and paraganglioma (SDHx, VHL, RET, NF1, MAX and TMEM127)Guideline Endocrine Society clinical practice guideline 2014; NCCN Neuroendocrine and Adrenal Tumors: Head and neck paragangliomas
Observation for small asymptomatic tumours; surgery or fractionated or stereotactic radiotherapy when growing or symptomatic, weighing cranial nerve risk.
- 2014GuidelineHereditary pheochromocytoma and paraganglioma (SDHx, VHL, RET, NF1, MAX and TMEM127)Guideline Endocrine Society clinical practice guideline 2014; NCCN Neuroendocrine and Adrenal Tumors: Surveillance of carriers
Annual metanephrines and clinical review from childhood, with whole-body MRI every two to three years in SDHB and SDHD carriers; screening for associated tumours (GIST, renal cell carcinoma, pituitary).
- 2014MilestoneHereditary pheochromocytoma and paraganglioma (SDHx, VHL, RET, NF1, MAX and TMEM127)Endocrine Society guideline recommends germline testing for all patients
A milestone in how this cancer is treated.