Phaeochromocytomas and paragangliomas (PPGL) are ultra-rare but highly heritable neuroendocrine tumours arising from sympathetic and parasympathetic tissues. Most PPGL secrete catecholamines (e.g. adrenaline, noradrenaline) causing paroxysmal symptoms such as hypertension, headache and tachycardia. Up to 20% of PPGL become metastatic with highest risk amongst patients carrying pathogenic SDHB mutations. However, even amongst this higher risk group, approximately two thirds don’t metastasise. With no recognised biomarkers of metastatic risk and no cure in the metastatic setting there is a clear need to better understand the molecular drivers of metastasis. We present here preliminary results of the international A5 SDHB Genomics Study, representing the most comprehensive analysis of SDHB-associated PPGL to date.
The A5 study cohort consists of 99 distinct tumour samples with matched blood from 84 patients. These samples have extensive clinical annotation and have been comprehensively analysed using whole genome sequencing (WGS), RNA-Sequencing (RNA-Seq) and histopathological review, with a subset analysed by single-nuclei RNA-Seq (snRNA-seq) and single-nuclei ATAC-Seq (snATAC-seq). TERT promoter mutations and a promoter-associated TERT structural rearrangement as well as gene disruptive ATRX mutations were most commonly associated with metastasis. TERT promoter mutations and rearrangements corresponded with TERT mRNA overexpression in tumours and open chromatin around the TERT promoter as indicated by snATAC-seq. Additionally, in one primary-metastasis pair a TERT promoter mutation was detected at subclonal levels in the primary tumour that subsequently became the dominant metastatic clone. Subclonal tumour-specific TERT expression was confirmed in this sample using snRNA-seq. TERT is the catalytic subunit of telomerase and it is likely that the activation of this gene allows for uncontrolled proliferation by maintaining telomere length in dividing cells. Similarly, mutations in ATRX were associated with alternative lengthening of telomeres suggesting contribution to tumour immortalisation through analogous mechanisms. While analysis is continuing, these preliminary findings confirm TERT and ATRX mutations as being associated with metastatic PPGL and that testing for TERT and ATRX mutations may predict the likelihood of disease progression.