Referral Network
University of California, San Francisco, CA, USA
High dose 131I-MIBG (metaiodobenzylguanadine) is currently being used to treat patients with malignant pheochromocytomas and paragangliomas. This therapy is available at the University of California, San Francisco (UCSF) under a Phase II protocol that has been approved by three UCSF review boards: The Committee on Human Research, The Comprehensive Cancer Center Protocol Committee, and the Pediatric Clinical Research Center.
Patients are considered for 131I-MIBG therapy only if their malignant tumors are avid for MIBG on diagnostic scans. Over 30 patients have been treated over the last 12 years; the majority of patients have experienced remissions, including several patients with complete remissions. We would like to recruit an additional 20 patients over the next 5 years.
For more information about high-dose 131I-MIBG therapy at UCSF, please contact:
Paul A. Fitzgerald, M.D.
Clinical Professor of Medicine
University of California, San Francisco
350 Parnassus Avenue, Suite 710
San Francisco, CA 94117
Email: paulf@itsa.ucsf.edu
Phone: 415-665-1136
National Institutes of Health, Bethesda, MD, USA
The NIH is a major referral center for patients with suspected or proven pheochromocytoma or with a genetic predisposition to develop the tumor.
Because the primary mission of the NIH is to conduct and support medical research, all NIH Clinical Center patients are enrolled into research studies that have undergone rigorous review and approval processes by Institution Review Boards (IRB's). This ensures that the study meets the appropriate standards for clinical research within the NIH intramural program.
Descriptions of specific pheochromocytoma-related clinical studies, inclusion and exclusion criteria, and contact information for referral and enrollment of patients to these studies are available below.
Diagnosis, Pathophysiology, and Molecular Biology of Pheochromocytoma
This study includes state-of-the-art biochemical testing and imaging procedures for diagnosis and localization of pheochromocytoma. Patients in whom resectable tumors are found are referred to another NIH clinical protocol that allows for surgical intervention (usually by laparoscopy), thereby providing valuable tissue specimens for further studies aimed at understanding the development of tumors and identifying new markers for diagnosis and targets for improved treatment, particularly of malignant pheochromocytoma. Patients with malignant pheochromocytoma may be referred to other clinical treatment protocols, while those in whom pheochromocytoma is excluded may be eligible for another NIH clinical protocol that aims to characterize and understand the condition of "pseudopheochromocytoma".
(131)I-Metaiodobenzylguanidine Treatment of Malignant Pheochromocytoma
This study evaluates the effectiveness of 131I-MIBG in treating malignant pheochromocytoma and whether sensitization medications improve the response to treatment.Characterization and Identification of Paroxysmal Hypertensive/Hypercatcholamine Syndromes Among Patients with Pseudopheochromocytoma
This study aims to identify causes of paroxysmal hypertension and symptoms suggesting a hypercatecholaminergic state in patients in whom pheochromocytoma has been excluded.Clinical Manifestations and Molecular Bases of Heritable Urologic Malignant Disorders
Royal North Shore Hospital, Sydney, Australia
International SDH Consortium
During the past three years, mutations have been identified in SDHB and SDHD (genes encoding for SDHB and SDHD, component peptides of mitochondrial complex II) in patients with familial pheochromocytoma and apparently sporadic pheochromocytoma.
As these tumors are rare, there is a paucity of information with regard to genotype/phenotype correlations and penetrance of disease in families with identified SDHB and SDHD mutations.
In an effort to answer these questions, we have established an International SDH Consortium and are seeking international cooperation to achieve sufficient numbers to draw statistically relevant conclusions. We currently have 60 families entered and would welcome the inclusion of any patients/families in whom germline SDHB or SDHD mutations have been identified in association with pheochromocytoma and /or paraganglioma. It is intended that the results of the study be submitted for publication in a peer- reviewed journal.
The study involves patient consent for the clinician to complete a Data Information sheet on the patientŐs medical history and then the de-identified data to be sent to the co-ordinating centre. Family members who have been identified as SDHB or SDHD mutation positive, but who do not have evidence of disease are also invited to participate.
For more information please contact : Dr Dindy Benn dbenn@med.usyd.edu.au
International SDH Consortium Coordinating Group
Cancer Genetics
Kolling Institute of Medical Research
Royal North Shore Hospital
St Leonards, NSW 2065, Australia Professor Bruce Robinson MD MSc FRACP bgr@med.usyd.edu.au
Dr Deborah Marsh BScAgr PhD dmarsh@med.usyd.edu.au
Dr Dindy Benn MSc (Med) PhD dbenn@med.usyd.edu.au
Ms Jennifer Reilly B Comm jreilly@gmp.usyd.edu.au
