North American Neuroendocrine Tumor Society (NANETS)
Meeting Minutes
February 07, 2008
Fairmont Southampton Hotel, Southampton, Bermuda

Attendance: Aaron Vinik, Larry Kvols, Lowell Anthony, Vay Liang (Bill) Go, M. Sue O'Dorisio, Richard Warner, Kari Brendtro, Steve Marx, Rodney Pommier, Eugene Woltering, Matthew Kulke, James Yao, Stanley Goldsmith.

Absent: William Maples

Proceedings:

Meeting was called to order by Larry Kvols at 6:30 pm. He reviewed the agenda and the following meeting objectives:

• Correct & Approve November Meeting Minutes

• Introduce Proposed New Levels of CLC Members

• Review 2007 Budget & General Assembly Meeting

• Discuss Friday Writing Group Session Agenda & Goals

• Highlight Bermuda Symposium Events

• Determine location & date of 2009 NANETS Symposium

^* November Meeting Minutes:

Each member was emailed a copy of the meeting minutes and a duplicate was also available for all to review again. The main topics were highlighted, briefly discussed and James Yao moved to approve them. That motion was seconded by Marx and the rest of the Board then approved them as written.

^* 2007 Budget overview:

Each member was given a P & L statement for review with minimal explanation of income/expenses. This statement will be put on the website for members only. Kari has arranged for a professional accounting firm to audit the books and file the necessary forms to the IRS.

*Corporate Liaison Committee (CLC) members:

CLC Founding Members: Three year commitment of $50,000

Molecular Insight Pharmaceuticals, Novartis, Tercica, The Carcinoid Cancer Foundation

Proposed New Levels for Corporate Liaison Committee Members: There was major discussion on this topic. Below is the final breakdown of the levels of membership on annual basis. It was felt the two most important benefits as a CLC member would be a link on the NANETS website and the annual meeting with the NANETS Executive Committee and Board of Directors. Therefore a yearly commitment of $25,000 or more (in kind contributions will be accepted) will secure those levels. In addition, Gene Woltering proposed that any company to give one million or more would receive a place on the Board of Directors. The rest of the participants agreed that no amount of money would ever be accepted for a place on the NANETS board.

CLC Premier Member - $50,000 (year to year commitment)

• An annual meeting with NANETS Executive Committee & Board of Directors

• Acknowledgement of support and link on NANETS website

• Six (6) complimentary registrations to the NANETS annual symposium

• Two (2) complimentary Allied memberships per year

• Access to membership list

• Subscription to official NANETS journal - PANCREAS, reaching over 4000 major institutions in 92 countries.

• Acknowledgement in NANETS's membership newsletter, The NETwork Connection.

• Draped exhibit table for duration of any NANETS conference to display and distribute company literature and information

• Invitation to any open meeting of NANETS

• NANETS has 501(c)(3) status; your contribution amount (less meal cost) is tax deductible

CLC Horizon Member - $25,000 (year to year commitment)

• Acknowledgement of support and link on NANETS website

• An annual meeting with NANETS Executive Committee & Board of Directors

• Four (4) complimentary registrations to the NANETS annual symposium

• One (1) complimentary Allied membership per year

• Access to membership list

• Subscription to official NANETS journal - PANCREAS, reaching over 4000 major institutions in 92 countries.

• Acknowledgement in NANETS's membership newsletter, The NETwork Connection.

• Draped exhibit table for duration of any NANETS conference to display and distribute company literature and information

• Invitation to any open meeting of NANETS

• NANETS has 501(c)(3) status; your contribution amount (less meal cost) is tax deductible

CLC TEAM member - $10,000 (year to year commitment)

• Two (2) complimentary registrations to the NANETS annual symposium

• One (1) complimentary Allied memberships per year

• Access to membership list

• Subscription to official NANETS journal - PANCREAS, reaching over 4000 major institutions in 92 countries.

• Acknowledgement in NANETS's membership newsletter, The NETwork Connection.

• Invitation to any open meeting of NANETS

• NANETS has 501(c)(3) status; your contribution amount (less meal cost) is tax deductible

CLC Partner - $5,000 (year to year commitment)

• One (1) complimentary registration to the NANETS annual symposium

• Access to membership list

• Subscription to official NANETS journal - PANCREAS, reaching over 4000 major institutions in 92 countries.

• Acknowledgement in NANETS's membership newsletter, The NETwork Connection.

• Invitation to any open meeting of NANETS

• NANETS has 501(c)(3) status; your contribution amount (less meal cost) is tax deductible

^*Bermuda Symposium: Kari gave a condensed overview of the weekend events and encouraged all Board members to be accessible and welcoming to all attendees.

^*2009 NANETS CME symposium: Kari gave a report on the availability/room prices of the venues the Board had indicated at the November meeting as the top choices. After those figures were presented it was decided that a more affordable city should be chosen. Discussion followed with many cities as possibilities and finally Charlotte, North Carolina was the number one selection and the dates will be October 1 - 3, 2009. This information will be introduced during the Bermuda General Assembly meeting.

^*Website / Newsletter: Kari updated group on the website tracking through Google and the possibility of getting a grant through Google to track "hits" for free and move our website higher on the search engine. Board discussed the published articles on the website and agreed that we need to check with an authority to get approval before posting them on site. Kari will check with OHSU on legalities. All agreed that the symposium abstracts should be posted on the site. Group wants the Newsletter done and distributed at upcoming professional symposiums.

^*Research: James Yao updated group on the proposed new ICD-9 codes for neuroendocrine tumors that have been submitted to the CDC. The idea of adding a distinct group codes for NETs was discussed at open meeting of CDC hosted at CMS. They should be adopted in 4/08. NANETS will post on website when finalized. He then reviewed some ongoing clinical trials:

Ongoing Clinical trials

• Bevacizumab + octreotide LAR vs. INF + octreotide LAR “SWOG" study endorsed by ECOG, CALGB, NCCTG has received central IRB approval and should open in the near future

• Radiant I - phase II study in islet cell patients with disease progression previously treated with chemotherapy (completed accrual),

• Radiant II - phase III study in carcinoid (ongoing)

• Radiant III - phase III study in islet cell carcinoma (ongoing)

• Pfizer Sutent trial -  phase III study in non-functional neuroendocrine tumors (ongoing)

• SOM230 - phase III study in refractory carcinoid syndrome to open in 2008

Matt Kulke gave an update on Lanreotide  - a Phase III study is ongoing in Europe in non-functional tumors for tumor control. The accrual is poor.

An NCI NET task force has been formed. Dr. Kulke has proposed a random assignment phase 2 study in islet cell carcinoma investigating novel agents and drug combinations.

Allied Healthcare Committee: Kari introduced to the group the concept of adding an Allied Healthcare Committee to NANETS. A group of individuals met and reviewed their goals/purpose to Kari before the meeting so she could present them to the Board. Nancy Gardner volunteered to chair this committee. Following is a summary:

• * Expand the allied healthcare professional's role in the NANETS educational congress.
• * Improve the allied healthcare professionals' presence by increasing membership and participation as   speakers/researchers.
• * Develop specific educational topics for the allied healthcare community and offer specific Nursing CEU's at the NANETS annual conferences.
• * Support NANETS allied healthcare members by having marketing booths and materials at national meetings.
• * Endorse educational seminars on NETS to be presented by allied healthcare members at national nursing and research symposiums.
• * Assist the committee in establishing 1-2 scholarships to attend the NANETS meeting

The Board unanimously approved the development and goals of this committee.

Meeting adjourned at 8:32 pm.

Meeting minutes submitted by James Yao & Matt Kulke, Research Coordinators and Kari Brendtro, Executive Director.

North American Neuroendocrine Tumor Society (NANETS)
Meeting Minutes
November 30, 2007
OMNI Hotel Park West - Dallas, Texas

Attendance:
Aaron Vinik, Larry Kvols, Lowell Anthony, Vay Liang (Bill) Go, M. Sue O’Dorisio, Richard Warner, Kari Brendtro, Steve Marx, William Maples. Absent: Rodney Pommier, Eugene Woltering, Matthew Kulke, James Yao, Stanley Goldsmith

Proceedings:
Meeting was called to order by Larry Kvols at 8:08 am. He reviewed the agenda and the following meeting objectives:

• Receive updates on the society’s budget and research committee developments
• Evaluate current CLC membership requirements
• Set publication date and format for first Newsletter
• Access Bermuda Symposium progress
• Determine location & date of 2009 NANETS Symposium
• Establish Writing Group goals & develop action plan

* Budget overview:

• Formal budget was not available for review; however Kari assured members that the budget is carefully being managed.
• Revenue from CLC members is in the $200,000 range.
• Novartis has approved a $100,000 grant for the CME
• Tercica has agreed to approximately $75,000 to support the symposium
• Other grants and support letters have been initiated to get additional CME funding
• Expected expenses for the upcoming conference are $250,000.
• Additional expenses are salary (Kari) and limited operational expenses (mailings, board meetings, etc).
• Kari will email the formal budget to board members in December.

*Corporate Liaison Committee (CLC) members:
Initially the board voted for each company to contribute $100,000 annually for 3 years to become a CLC member. This subsequently was revoted on via email and lowered to 50,000 yearly for 3 years.
Due to larger corporations’ logistical limitations for lump sum contributions, it was suggested that this contribution did not have to be in one payment. Instead, a company can meet this level of payment in a variety of ways; supporting the newsletter or website, funding booth space, assisting in meeting expenses, providing services, etc. NANETS will identify projects that are appropriate. A motion to have CLC members contribute to NANETS in incremental contributions was voted on and unanimously approved.
Since Novartis will meet this requirement in 2007 it was voted and approved to include Novartis as a founding CLC member.
Other CLC members are Molecular Insight Pharmaceuticals and Tercica.
Carcinoid Cancer Foundation has pledged for 1 year--Dr. Warner to look into the extended 3 year pledge so they can be considered a FOUNDING CLC member.
Board had discussion on tiered level for CLC support (i.e. Platinum, Gold, Bronze). Kari and Bill will work on defining the parameters and benefits associated with each membership level.
Concept of board members contacting other possible CLC members was endorsed. Larry Kvols will be in contact with Covidian and Delcath.

*Newsletter/Website:
It was recognized by the group that we need to improve communication within our membership and to the general public. The website and newsletter are both good vehicles.
Novartis has committed to support the Newsletter
First Newsletter expected to be published on December 15. With this in mind, content should be delivered to Kari by December 10.
Newsletter will have a message from Dr. Kvols. There will also be a segment on the CLC process by Dr. Maples.
Newsletter will be posted on website. Initial newsletters will be mailed to selected audience to help gain visibility.
Newsletter will include an application for membership to NANETS
Bill Go and Sue O’Dorisio will write a section on various funding opportunities.
Suggested distributing at key society meetings
Kari will have web guy start tracking hits on website
Interest expressed to have NANETS higher on the list for Google searches—Newsletter and other information could then be linked to the Google search.
Kari will check with google on how to “move” NANETS up on the list
Aaron Vinik suggested Endotext.org be put on link section

*Bermuda Symposium:
48 speakers confirmed for presentations
Kari mailed 4300 brochures to selected audience/companies/support group leaders
PDF format to be sent to faculty to distribute to their communities
Distribute to key society meetings
To date there are approximately 100 members of NANETS who will be invited
Cost of hotel $209/night
Faculty encouraged to complete Disclosure form, etc.
Outlines for presentations are due 12/21/2007
Speakers are encouraged to recruit two additional attendees
Larry will write a Presidential Address for the symposium syllabus

*Research:
James Yao joined by phone
Deadline for poster presentation extended to 12/31/07. Kari to look into funding.
James Yao reviewed proposed new ICD-9 codes that have been submitted to the . They should be adopted in 4/08. NANETS will post on website when finalized.
Discussion regarding the paper which will be generated from NCI summit which will be inserted into the congressional record. This will define the "shopping list" from the NCI summit and guide our efforts in pursuing funding.
Ongoing Clinical trials
Bevacizumab + octreotide LAR vs. INF + octreotide LAR (to be released in the near future)--SWOG
Radiant I (completed accrual),
Radiant II (ongoing)
Radiant III in NETs to open soon
Pfizer Sutent trial
SOM230 to open later in 2008
GI steering committee NET Task Force was felt to be a resource/mechanism for NANETS to develop ideas.

*Writing Groups:
Discussion regarding goals of writing groups and timelines occurred.
Bill Go explained that in other consensus papers he has been involved in writing there are four ways in which they are used. We need to consider that our manuscript will also have four purposes:

A resource for physicians to teach themselves & others about NETs
Healthcare providers will refer to the guidelines in cases of insurance disputes over reimbursement issues
Live document to constantly refer to for up-to date developments in the field
Shopping list for unanswered questions
It was voted and the vote was unanimous to include pheochromocytoma, medullary thyroid, paraganglinoma, and c cell hyperplasia of thyroid in the guidelines as well as an added scope of NANETS as a society.
Karel Paska will be invited to be a team member on the Targeted Therapies group
Ed Coleman should be included in the Follow-up team as well as his Targeted Therapies group???
Kari will check with group about LCD projector and laptop for Friday group meeting (Screen in already provided in room).
Chairs are responsible for bringing their own laptops/LCD projector for their team if needed.

Agenda for Friday morning session will be:

• 8:00 – 8:15 Welcome & Overview of goals

• 8:15 – 8:30 Review “hot topic” items to discuss/include in section

• 8:30 – 11:45 Each Team will go to separate rooms to begin development of position paper

• 11:45 – 1:15 Group Chairs will give 10 min presentation on team’s progress

• 1:15 – 1:25 Question & Answer

• 1:25 – 1:30 Future Meetings & Timelines (ASCO 2008)

Lowell Anthony will ask Gene Woltering to Chair the Writing Group Meeting on Friday.
ENETS 2007 Consensus Papers will be used as a “template” for the NANETS guidelines.
Each Writing Group chair will determine what literature reviews his group will use to support the position paper. NANETS encourages those references be within the last 7 years. (2000-2007)
Writing group chairs will email Gene & Kari the review articles by Dec 31
All literature review articles will be placed on website for all team members reference
NANETS will present guidelines at the 2009 NANETS CME symposium.

*2009 NANETS CME symposium:
A motion was brought to the table to hold the next symposium in September/October 2009. It was unanimously approved.
Discussion was held regarding venues. San Francisco, Chicago, Baltimore were the top three choices. Kari will investigate prices & hotels and get information back to the group for a final vote. Other potential locations were also suggested. Santa Fe, Tucson, Charlotte, Nashville, Austin.
Group felt like we should get a Keynote speaker for the event, depending on the cost. Many suggestions were offered and contacts will not be made until we decide where to hold the event. Sam Donaldson, Steve Jobs, Schwarzenegger/ Shriver, NY Governor, Congressman from Connecticut, Lance Armstrong, Congressman Chris Van Hollen.
The 2009 agenda will include the introduction of the NANETS guidelines with each section being presented and discussed, a Hot Topics segment (controversial issues) with open discussion/panel format, and time for both basic science and clinical research abstract presentations, poster session.

*Pancreas Journal:
Bill Go said that the board of Pancreas is not willing to change the journal name but is willing to include add Neuroendocrine Tumors under its name.
David Meyer will send Kari the contract for NANETS to be the subscriber so all members can then have access.
January 2010 issue will publish the NANETS guidelines. NANETS must have in print format by September 30, 2009.
The support of this journal is $10,000/year.

Meeting adjourned at 1:10 pm.

Meeting minutes submitted by William Maples, Vice Chair and Kari Brendtro, Executive Director

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North American NeuroEndocrine Tumor Society (NANETS)
Meeting Minutes
September 28, 2006
DoubleTree Hotel – Lloyd Center, Portland, OR

Attendance:
Larry Kvols, Kari Brendtro, Eugene Woltering, Sue O’Dorisio, Bertram Wiedenmann, Kjell Oberg, Guido Rindi, Aaron Vinik, Lowell Anthony, Richard Warner, Anthony Heaney, Stephen Marx, Vay Liang (Bill Go), Herbert Chen, Edward Wolin, Rodney Pommier, Stanley Goldsmith, Girish Shah, Anne Marie Neumann, Nancy Gardner, Jonathon Strosberg, Aejaz Nasir, Muthusamy Kunnimalaiyaan, Phil Bourdeaux, Thomas O’Dorisio, Dan Granberg, David Liu, Gail Amyotte, Todd Crocenzi, Mike Givens, Jerome Zacks, Michail Shafir, Lynn Ratner, Robert Jensen, Patricia Tang.

Proceedings:

• This was the official organizational meeting to form the new professional corporation known as the North American NeuroEndocrine Tumor Society (NANETS). The primary purpose of this organization is to improve neuroendocrine tumor disease management through increased research and educational opportunities.
• Meeting called to order at 6:10 p.m. by Larry Kvols. Agenda and goals of the meeting were reviewed.
• Kari Brendtro presented the Organizational Chart and a draft copy of the proposed Bylaws. Group discussed various articles and modified some of the language. These changes were noted, voted on and the Bylaws were approved by the group. Goal to have 501 (c) 3 application completed and submitted to IRS by mid November
• Officers, Board of Director and Advisory Board members were elected. Each attendee received a ballot at the start of the meeting. Individuals nominated for a position were introduced and had time to address the group on why he/she was a good candidate for the position. Nominees not in attendance were discussed by an attendee familiar with the candidate’s credentials. Voting commenced, ballots collected and votes were tabulated. There was a tie between Stephen Marx and Anthony Heaney for the seventh Board of Director position. Both candidates left the room and a hand vote was taken. Stephen Marx was chosen. Following are the official results:

OFFICERS:
Chair – Larry Kvols
Vice Chair/Secretary – William Maples
Treasurer – Sue O’Dorisio
Research Co –Coordinators – Matthew Kulke, James Yao
Education Coordinator – Eugene Woltering
Executive Director – Kari Brendtro

Board Of Directors:
Lowell Anthony, Vay Liang W.Go, Stanley Goldsmith, Stephen Marx, Rodney Pommier, Aaron Vinik,
Richard Warner.

Advisory Board:
Wouter de Herder, Charles Nutting, Kjell Oberg, Guido Rindi, Bertram Wiedenmann.

* Membership Fees were established after much discussion. This year the fees will cover a 15 month membership, October 2006 – December 2007. They were voted on and approved as follows:
Professional Members: $50
Allied Members: $100
Resident/Postdoctoral/Fellow: $25
Students: $0
* William Go presented a proposal on the possibility of having the professional journal – Pancreas, as the official online journal of NANETS. Bertram Wiedenmann suggested NANETS use the journal that ENETS members receive, NeuroEndocrinology. No official decision was made.

* Group discussion commenced on marketing strategies. It was decided to have an information booth at several professional symposiums in 2007 to promote the formation of NANETS to a variety of specialists. Following were the top events to attempt to secure exhibit space:
ASCO GI Symposium: Jan 2007
Society of Surgical Oncology – March 2007
American Association of Clinical Endocrinologists – April 2007
American Association of Endocrine Surgeons – April 2007
American Association of Cancer Research – April 2007
Digestive Disease Week – May 2007
The Endocrine Society – June 2007
ASCO – June 2007
The development of a website was also presented as an essential marketing tool with the goal of having one operational by mid November.

* A “brainstorming” session followed on what organizations to approach for funding. Possible allied membership and funding sources:

Schering-Plough, QLT, Mallinkroft, Genetech, Pfizer, Amgen, Astrazeneca, Given Imaging, Nordian, RITA, Boston Scientific, General Electric/ GE Healthcare, Phillips, Siemens, Metronics, Cardinal Health Care, Ethecan, Alcoa, Biosphere, Roche, Oncotech, Genzyme, Perkin Elmer, Endocare, Novartis, Olympus.

Attendees were encouraged to continue to come up with other potential resources and contact Kari with suggestions or contact information.

* Larry Kvols thanked the group for their input and contributions to the meeting. He encouraged all to join NANETS and complete the form for Research or Educational committee participation.

• Meeting adjourned at 8:07 p.m.
• Minutes submitted by Executive Director, Kari Brendtro