Patients are adults or children with known or suspected sporadic or familial pheochromocytoma/paraganglioma, on the basis of one or more of the following:
- New onset of hypertension or hypertensive episodes and symptoms suggestive of pheochromocytoma/paraganglioma (sweating, headache, pallor, palpitations)
- High levels of blood or urinary catecholamines or metanephrines
- Sporadic pheochromocytoma/paraganglioma
- Family history of pheochromocytoma/paraganglioma or genetic mutations known to predispose individuals to the development of pheochromocytoma/paraganglioma. We accept patients with all pheo/para-related genetic mutations, including
- SDHx (succinate dehydrogenase subunit A, B, C, or D)
- VHL (Von Hippel-Lindau)
- MEN (Medullary Endocrine Neoplasia)
Further eligibility criteria are as follows:
- Patients must be willing to return to NIH for follow-up evaluation.
- Patients with pheochromocytoma/paraganglioma will be accepted based on referral from clinicians.
- Imaging studies are not done in pregnant or lactating women. A pregnancy test is performed in women of child-bearing age (up to age 55). In those with positive results, no PET scanning, MIBG scanning, contrast CT, or vena cava sampling is performed.
- Glucagon and clonidine testing are not performed in pregnant women.
- Pregnant women who are greater than 26 weeks pregnant are excluded from admission to the Clinical Center but may be studied as outpatients.
- Patients with impaired mental capacity that precludes informed consent cannot participate in this study.