BREAKOUT SESSIONS

Format:
An important feature of the symposium is the 4 breakout sessions to be held simultaneously over 2 1/2 hours late on Saturday afternoon (4:00 PM - 6:30PM), October 22nd. The purpose of these breakout sessions is to stimulate discussion on issues that could benefit from resolution in the form of recommendations, or where possible some form of consensus from leaders in the field. These breakout sessions may include a series of short (up to 10 minutes maximum) presentations from discussion leaders, selected specialists and patient representatives over the first 40 to 60 minutes, the following 60 to 90 minutes dedicated to moderator-led discussions on the topics under consideration, and the final period involving assistance to Discussion Leaders in formulating a summary for subsequent presentation to all attendees at the meeting. The discussion leaders for each session will present the outcomes of discussion sessions to the general audience on Sunday morning. At this stage it is anticipated that generally agreed upon recommendations can be finalized for publication in the Proceedings.

The purpose of initial short presentations is for Discussion Leaders to outline the discussion topics and speakers to present different points of view on these topics, thereby providing focal points to stimulate subsequent discussion by all attendees at sessions.

A separate breakfast discussion session will be held specifically for patients early on Saturday morning, at which time issues and questions will be formulated for presentation by patient representatives at the 4 breakout sessions.

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A: Genetics and Pheochromocytoma/Paraganglioma Syndromes
Discussion Leaders: Robert Dluhy and Stefan Bornstein

Discussion Topics:
• Should all patients with pheochromocytoma undergo genetic testing for possible disease-causing mutations or should this be confined to patients where there is suspicion of a syndrome or only to young patients?
• What cost-benefit factors should be considered?
• How should paragangliomas and pheochromocytomas best be defined?

Speakers:
• Joyce Graff – Pheos as clues to syndromes
• Robert Gagel – Should patients with apparently sporadic pheochromocytomas or paragangliomas be screened for hereditary syndromes?
• Hartmut Neumann – Germ-line mutation testing in pheochromocytoma - Who benefits?

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B: Biochemical Diagnosis and Localization: Can We Reach a Consensus?
Discussion Leaders: Ashley B. Grossman and Hendrik Lehnert

Discussion Topics:
• What are the preferred biochemical tests or testing algorithms for confirming or excluding pheochromocytoma and what cost benefit factors should be considered?
• What precautions should be considered to minimize or avoid false-positive results or drug-interferences during biochemical testing and imaging procedures?
• What are the most suitable approaches for diagnosis of non-functional paragangliomas (i.e. those tumors that do not synthesize catecholamines?)
• What imaging strategies are appropriate for localization of pheochromocytoma and when should they be applied?
• What evidence for the presence of a tumor justifies imaging studies?

Speakers:
• Debra Harlander – Challenges of Biochemical Testing: A Patient Perspective
• Anna M. Sawka – Recent developments in biochemical testing for pheochromocytoma
• Graeme Eisenhofer – A practical approach to efficient and cost-effective biochemical diagnosis of pheochromocytoma: the NIH perspective
• Rodney Reznek – Cross-sectional imaging of pheochromocytomas and paragangliomas: What are we trying to achieve?
• James Sisson – Pheochromocytomas: When, where and why

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C: Management and Treatment of Pheochromocytoma?
Discussion Leaders: Håkan Ahlman and Massimo Mannelli

Discussion Topics:
• What are the most appropriate strategies for the medical management of patients with pheochromocytoma before and during surgery? What drugs? What doses? What clinical parameters? What surgical approaches or alternatives to surgery for different tumors and tumor locations?
• What if any considerations are required for medical management of pheochromocytomas during pregnancy and childhood or encountered in asymptomatic and normotensive individuals?
• What is appropriate follow-up for the patient after surgical resection of a pheochromocytoma? How should such patients be advised?
• What should be done for patients with non-resectable tumors or malignancies? Is chemotherpay useful? Does MIBG radionuclide therapy provide adequate treatment? Can such existing therapies be improved upon or tailored according to tumor characteristics? Is there a need for new targets for treatment of malignant pheochromocytoma and if so, what are the most promising leads and approaches to identify such targets and develop new drugs for these targets? Is there a need for experimental models of pheochromocytoma, and if so, for what specific purpose?

Speakers:
• Patient representative
• Eva Forssell-Aronsson – Radionuclide aspects in the treatment of malignant pheochromocytoma
• Tito Fojo – Present and future therapies for malignant pheochromocytoma

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D: Pathology of Pheochromocytoma and Extra-Adrenal Paraganglioma
Discussion Leaders: Arthur Tischler and Noriko Kimura

Discussion Topics:
The objective of the session is to organize a Pathology Working Group that will formulate plans for a study to optimize the analysis of pheochromocytomas and extra-adrenal paragangliomas by pathologists. Questions that will be addressed include:
• Can a reproducible, statistically validated pathology scoring system be developed to identify high-risk/ poor prognosis tumors within groups with known or unknown mutations?
• Can pathology be helpful in identifying tumors with particular mutations?
• What ancillary immunohistochemical studies should be performed for risk assessment, phenotype characterization, and identification of targets for therapy?

Speakers:
• Arthur Tischler – What are the current problems in assessment of pheochromocytomas by pathologists?
• Maria Merino
• Anne McNichol
• Noriko Kimura

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Patient Support
Discussion Leaders: Joyce Graff, MA (VHL Family Alliance); Mary Peebels & Debra R Harlander (Pheochromocytoma Support Board)

A special breakfast session will be held for patients early on Saturday morning (7:00 AM - 8:30 AM), preceding and separate from the other 4 breakout sessions. Leaders of the other 4 scientific breakout sessions and other selected clinicians and scientists will be present at this session to field any questions. Questions and issues arising from this session will be later presented by patient representatives at the scientific breakout sessions.

Discussion Topics:
• How many pheochromocytoma patients per year should a doctor treat or a surgeon operate on to be considered truly experienced?
• Would it be possible to set up an international database of experienced clinicians?
• Is it necessary to follow the dietary restrictions and lie down before plasma free metanephrine testing?
• Why do so many patients run into resistance on the part of their doctors when they request that the plasma free metanephrine test be performed, and what can be done about this problem?
• Is it possible to set up firm guidelines for medical management before surgical resection of pheochromocytoma?
• What is the difference between an incidentaloma and a pseudopheochromocytoma?
• What evidence exists to indicate causal relationships between pheochromocytoma and psychiatric symptoms (e.g.,depression)?
• Many patients with all the symptoms of pheochromocytoma, yet who test negative with all known tests, are often told that it is all in their heads; how could such patients better be helped in dealing with this dilemma?
• What are the possible treatments for pheo and metastatic pheo, and which are best and why?
• What are the similarities and differences between MEN/VHL type pheochromocytoma and spontaneous types of pheochromocytoma?
• Where in the body can pheochromocytomas be found?
• Is it known how many new cases of pheochromocytoma are being discovered each year? How long should one wait before removing a pheo?
• Some physicians seem to think one should wait until the numbers reach a certain level. But if the patient is feeling symptoms, why wait? What are the pros and cons?