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The center where rare disease is common

We are one of the largest centers in the United States and worldwide to properly diagnose and treat patients with pheochromocytoma and paraganglioma. We have a unique blend of academic and clinical medicine.

Our NIH research protocol focuses on the genetics, diagnosis, localization, and surgical and interventional radiological treatment of pheochromocytoma and paraganglioma.

Pheochromocytomas and paragangliomas are neuroendocrine tumors that present with symptoms of hypertension, tachycardia, sweating and anxiety among others. The clinical goal of our program is to establish more effective diagnostic and localization techniques to ensure that no tumor goes undiagnosed as well as to establish new treatment options for this disease. For example, we developed the leading biochemical and imaging techniques used in the diagnosis of these tumors by using plasma metanephrines, methoxytyramine, modified clonidine suppression test, and 18F-fluorodopamine PET scanning. Furthermore, the first radiofrequency ablation treatment for metastatic lesions was performed by our institution.

Our basic laboratory is working intensively in several different areas studying this disease, including the development of an animal model of metastatic pheochromocytoma or paraganglioma and the use of genomics and proteomics.

Specifically, the development of an animal model of metastatic pheochromocytoma or paraganglioma is crucial in testing various treatment modalities. Recently, we have introduced this metastatic model and used it successfully in experimental treatment approaches, including LB-1 compound. The studies of genomics and proteomics play an important role in the pathogenesis of metastatic disease and thus allow for earlier detection of malignancy or metastatic disease, which is an important part of our basic science studies. Those techniques helped us to identify some markers that can be very useful to predict metastasis or detect SDHx-related pheochromocytoma or paraganglioma.

All our efforts are focused on our patients, as demonstrated through our motto: "Patients are our passion and we are their hope."

Dr. Karel Pacak, an internationally recognized leader in the study of pheochromocytoma/paraganglioma, is the principal investigator for this research team. Dr. Pacak has published over 300 articles on pheochromocytoma/paraganglioma and has authored several books and book chapters, with more than 14 years of experience with patients suffering from this disease.

Eligibility Criteria

We accept both children and adults into our study. Patients with genetic mutations, sporadic pheo/para, or new onset of signs and symptoms associated with pheo/para are accepted. To participate in our protocol, patients must be willing to return to the NIH for follow-up evaluation.

To find out if you are eligible to participate in our study, please see our Eligibility Criteria.