Pheochromocytoma and Paraganglioma Resources

Links to websites of groups that study or provide information about pheochromocytoma and paraganglioma.

General Information

Services, Resources, and Support

  • Endocrine Society external link
    Formerly the Hormone Health Network, the Endocrine Society is an educational resource that provides information on the prevention, treatment, and cure of hormone-related conditions.
  • National Adrenal Diseases Foundation external link
    This organization provides information and resources on adrenal diseases.
  • Pheo Para Alliance external link 
    The Alliance provides support, research, and information on pheochromocytoma for patients and their families.
  • Von Hippel-Lindau (VHL) Family Alliance external link
    The VHL Family Alliance provides access to articles and research in all areas of health care related to VHL.

Please note: Links to organizations and information included on this page do not indicate endorsement from NICHD, NIH, or HHS.

Information about Pheochromocytoma and Paraganglioma Research

  • NICHD Programs and Resources:
  • Program in Reproductive and Adult Endocrinology (PRAE)
    PRAE conducts and supports research on pheochromocytoma and paraganglioma through its Pacak Lab in the Section on Medical Neuroendocrinology. Read more about the Pacak Lab in the Division of Intramural Research (DIR) 2012 Annual Report.
  • Loh Lab: Section on Cellular Neurobiology
    Part of the Program in Developmental Neuroscience (PDN), the Loh Lab studies the cell biology of endocrine and neuroendocrine cells and conducts clinical studies contributing to our understanding of pheochromocytoma. Read more about the Loh Lab in the DIR 2012 Annual Report.
  • NICHD Clinical Trials:
    • Prediction of Pheochromocytoma Spreading after Tumor Removal
      NICHD-funded researchers are currently conducting clinical trials to allow the prediction of tumor spread (metastasis). Researchers have studied markers related to the likelihood of tumor metastasis. In a prospective clinical study, researchers were able to use markers from removed tumors to predict the likelihood of future metastasis, although all patients were diagnosed with benign tumors at the time of surgery.
    • Release of Hormones from Pheochromocytomas
      NICHD-supported clinical trials of pheochromocytoma are also seeking to understand factors of the disease that contribute to the differences seen among patients. In one study, researchers are examining the age of patients when they are diagnosed and the hormones that are released by their tumors. In one study, patients with epinephrine-producing tumors were diagnosed 11 years later than patients with tumors that did not produce epinephrine. Differences in the age at which patients are diagnosed and the type of hormones produced by the tumors can help doctors to determine treatment approaches.
  • NIH organized the Management of Clinically Inapparent Adrenal Mass conference (May 2002) to develop recommendations for physicians to help them evaluate adrenal gland tumors and decide which to remove and which to leave alone. The Agency for Healthcare Research and Quality reviewed the quality of evidence for adrenal masses and identified research gaps and issued a report of its findings. In addition, panel members at the conference issued a consensus statement assessing the state of the science.
  • General Information About Pheochromocytoma and Paraganglioma
    The National Cancer Institute maintains detailed information about pheochromocytoma, including clinical features, pathologic classification of tumor cells, standard treatments, and other resources for researchers and medical professionals.

Please note: Links to organizations and information included on this page do not indicate endorsement from NICHD, NIH, or HHS.

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