About NECCA

Mission Statement

The purpose of the New England Congenital Cardiology Association is to improve continuously the quality, safety, effectiveness, availability, and cost of care for children and adults with known or suspected congenital or acquired heart disease of childhood. NECCA will fulfill its purpose through activities in five interrelated domains: quality improvement, research, advocacy, communication, and education.

Executive Board

  • President: Naomi Gauthier, MD – Dartmouth Children’s Hospital, Dover, NH
  • Jeremy Asnes, MD – Yale University, New Haven, CT
  • Phylis Pollack, MD – Child Heart Associates, Worcester, MA
  • Michael Willers, MD – The Children’s Heart Center of Western Massachusetts, Springfield, MA
  • David Kane, MD – University of Massachusetts, Worcester, MA
  • Adrian Moran, MD – Pediatric Cardiac Associates, Portland, ME
  • David Brown, MD – Children’s Hospital Boston, Boston, MA
  • Scott Yeager, MD – University of Vermont, Burlington, VT
  • Audrey Marshall, MD – Children’s Hospital Boston, Boston, MA
  • Anne Valente, MD – Children’s Hospital Boston, Boston, MA



Latest Edition of “The Conduit” – NECCA Newsletter – November 10, 2014
The Conduit – Volume 4

2013 Annual Meeting

Photos from the 2013 Annual Meeting

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The Planning Committee

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Steve Sanders Teaching Sessions

The Executive Board

NECCA/NECCRF Fiscal Agreement Proposal

NECCA NECCRF FS Agreement

Fiscal Sponsorship Agreement
Between
NECCRF and NECCA

This letter represents the Fiscal Sponsorship Agreement (the “Agreement”) made
between New England Congenital Cardiology Research Foundation (“NECCRF”) and
New England Congenital Cardiology Association (“NECCA”). NECCRF is a
Massachusetts nonprofit corporation qualified as exempt from federal income tax under
Section 501(c)(3) of the Internal Revenue Code (the “Code”) and classified as a public
charity under Section 509(a)(1) of the Code. NECCA is an unincorporated association
established to improve continuously the quality, safety, effectiveness, availability, and
cost of care for children and adults with known or suspected congenital or acquired heart
disease of childhood (the “Charitable Purposes”).

RECITALS

A. The Board of Directors of NECCRF has approved the establishment of a
restricted fund to receive donations earmarked for support of the Charitable Purposes and
to make distributions in furtherance of the Charitable Purposes.
B. The members of NECCA have approved entering into a fiscal sponsorship
arrangement with NECCRF to further the Charitable Purposes.
B. Given the compatibility of the goals and missions of the two parties,
NECCRF desires to act as the fiscal sponsor for the Charitable Purposes of NECCA, by
receiving assets and incurring liabilities associated with the Charitable Purposes,
beginning on the Effective Date (defined below) and using the assets to pursue the
objectives of the Charitable Purposes, which the Board of Directors of NECCRF has
determined will further its charitable and educational goals. NECCA desires to manage
the Charitable Purposes under the sponsorship of NECCRF.
AGREEMENT

1. Term of Agreement
NECCRF shall assume operation of the Charitable Purposes effective (date) (the
“Effective Date”). This Agreement shall remain in effect until terminated according to
the terms of paragraph 6, below.

2. Relationship
An Executive Board shall oversee the activities of NECCA. The initial Executive Board
shall be selected by the leaders of NECCA as of the Effective Date, and shall include at
least one, but potentially more than one, member of the Board of Directors of NECCRF.
Any vacancies on the Executive Board shall be filled by vote of the then serving
members of the Executive Board. Authority to manage NECCA activities is delegated by

the Board of Directors of NECCRF to the NECCA Executive Board, but such authority
remains subject to the ultimate direction and control of the Board of Directors of
NECCRF.

Beginning on the Effective Date, NECCRF will receive funds on behalf of
NECCA, and disburse funds in furtherance of its mission. The fundraising of each party
will be conducted separately (although may be coordinated to avoid conflicts), and
NECCA will be responsible for raising funds to support its own operations. All gifts,
sponsorship and grant receipts, funds from ticket sales, or other receipts received on
behalf of NECCA will be restricted for the Charitable Purposes and kept in a separate
account (the “Restricted Fund”). Any monies held by NECCRF prior to the Effective
Date shall not be considered part of the Restricted Fund.

All of the assets received by NECCRF under the terms of this Agreement shall be
used for the sole benefit of the Charitable Purposes, as those purposes may be defined
from time to time by the Executive Board, provided that they remain consistent with the
tax-exempt purposes of NECCRF. NECCRF retains the right, which may be exercised
without the consent of the NECCA Executive Board, to spend such funds so as to
accomplish the Charitable Purposes as nearly as possible within NECCRF’s sole
judgment, subject to any donor-imposed restrictions on the charitable use of such assets.
In no event shall assets be used in a manner inconsistent with the provisions and
restrictions applicable to an organization described in Section 501(c)(3) of the Code.

All cash and other property in the Restricted Fund, and expenses paid from the
Restricted Fund, shall be reported as income and expenses of NECCRF for both tax
reporting purposes and for purposes of NECCRF’s financial statements.

Any contract negotiations made on behalf of NECCA are subject to approval by
NECCRF.

3. NECCRF Responsibilities
In furtherance of the Charitable Purposes, NECCRF will (a) provide administrative
support, as available; (b) process, deposit, and acknowledge contributions; (c) pay
approved invoices; (d) reconcile the income and expense reports produced by NECCA
with its records; (e) prepare and document fiscal agency information for annual audit, as
necessary; (f) issue appropriate tax forms to service providers (e.g., outside paid
speakers) working on NECCA matters; and (g) include NECCA Executive Committee
members, while acting in their capacity as such, under its liability insurance coverage.

4. NECCA Responsibilities
In furtherance of the Charitable Purposes, NECCA will (a) provide general oversight of
the activities engaged in to further the Charitable Purposes; (b) operate the Executive
Board in a manner consistent with the NECCRF By-Laws in place as of the Effective
Date or as amended by NECCRF’s Board of Directors with input from the Executive

Board to the extent such amendments directly relate to NECCA, (c) maintain its own
website; (d) manage its own membership list and recruitment process; and (d) produce
and provide to NECCRF regular income and expense reports; (e) submit annual reports
of its activities in further of the Charitable Purposes to NECCRF, no later than two
months following the close of NECCRF’s fiscal year.

5. Fees
NECCRF will assess against the Restricted Fund all reasonable expenses related to
administrative services allocable to NECCA, including, but not limited to, accounting,
filing, auditing, secretarial, and legal bills; provided, however that such assessment shall
not exceed five percent (5%) of the amounts received on behalf of NECCA during each
fiscal year. In furtherance of in the Charitable Purposes and NECCRF’s related exempt
purposes, NECCRF may, in its sole and absolute discretion, waive all or a portion of the
assessment described above. NECCRF and NECCA agree that if the cost burden to
NECCRF is consistently above five percent (5%) of the receipts received on behalf of
NECCA, or an unusually large expense is incurred, then the fee structure outlined in this
paragraph 5, shall be re-negotiated and any legal fees associated with such change will be
charged to NECCA.

6. Transfer of Assets
As a pre-condition to the effectiveness of this Agreement, a representative of NECCA
shall sign a General Bill of Sale and Assignment, substantially in the form attached here
as Exhibit A, transferring all tangible and intangible assets of NECCA to NECCRF, on or
prior to the Effective Date.

7. Termination
If either NECCA or NECCRF desires to terminate this Agreement, either party may do so
under the following terms. Either NECCRF or NECCA may terminate this Agreement
on 60 days’ written notice to the other party, so long as another nonprofit organization,
which is tax-exempt under Section 501(c)(3) of the Code and is not classified as a private
foundation under Section 509(a) of the Code (a “Successor”), is willing and able to
sponsor the Charitable Purposes of NECCA, and such sponsorship arrangement is
approved in writing by both parties by the end of the 60-day period.

If the parties cannot agree on a Successor to sponsor the Charitable Purposes, NECCA
shall have an additional 60 days to find a Successor willing and able to sponsor the
Charitable Purposes. If a Successor is found, the balance of the assets in NECCRF’s
Restricted Fund for the Charitable Purposes, together with any other tangible or
intangible assets held or liabilities incurred by NECCRF in connection with the
Charitable Purposes, shall be transferred to the Successor at the end of the notice period
or any extension thereof, subject to the approval of any third parties that may be required.
If NECCA has formed a new organization that qualifies as a Successor, such organization
shall be eligible to receive all such assets and liabilities so long as such organization has

received a determination letter from the Internal Revenue Service, indicating that such
qualifications have been met. If no Successor is found, NECCRF may dispose of any
remaining net assets in a manner consistent with the Charitable Purposes of the Restricted
Fund.

Notwithstanding the above provisions, either party to this Agreement may terminate the
Agreement in the event of a material breach of the Agreement by the other party by
giving 30 days’ written notice to the other party.

Notwithstanding the above provisions, NECCRF may terminate this Agreement
immediately in the event NECCA incurs a material liability without proper authorization
of NECCRF, or if, in the sole and exclusive judgment of NECCRF, NECCA engages in
conduct or activities that NECCRF deems inappropriate or inconsistent with its purposes
or those of its corporate members.

8. Miscellaneous
Each provision of this Agreement shall be separately enforceable, and the invalidity of
one provision shall not affect the validity or enforceability of any other provision. This
Agreement shall be interpreted and construed in accordance with the laws of the
Commonwealth of Massachusetts.

9. Entire Agreement
This Agreement constitutes the only agreement, and supersedes all prior agreements and
undertakings, both written and oral, among the parties with respect to the subject matter
hereof. This Agreement may not be amended or modified, except in a writing signed by
all parties to this Agreement.

IN WITNESS WHEREOF, the parties hereto have executed this Agreement under
seal as of the Effective Date.

2012 Annual Meeting

Group photo from the 2012Annual Meeting






NECCA’s fourth annual meeting was held on October 27, 2012 at the Saybrook Point Inn & Spa in Old Saybrook, Connecticut. This year’s meeting was the first to have a clinical “theme” and focused on successfully transitioning patients into adulthood. More than 50 pediatric and adult congenital cardiologists,. as well as several cardiology fellows, nurse practitioners and physician assistants were in attendance, representing all of the New England states
The meeting began with an update from the NECCA QI committee on the Chest Pain and Syncope projects. With the active and ongoing participation of NECCA members across the region, the QI committee has been able to develop a sizable and unique dataset covering various aspects of outpatient encounters for chest pain in children. Gerry Angoff presented a summary of the data. The findings from a comprehensive data analysis have been written into a manuscript and submitted for publication. This is a terrific achievement for the QI committee and NECCA.
The Syncope SCAMP project group has moved through several iterations of the syncope data collection tool. Yvonne Paris presented a preliminary data analysis. The project is ongoing and we look forward to robust data collection over the next 12 months.
Scott Yeagar gave an update from the New England Congenital Cardiology Research Foundation. NECCRF has awarded its first grant to Mike Fahey and Steve Sanders for the development of a multimedia, open access educational website for congenital heart disease. Anyone with Internet access will be able to view the anatomical 3D models, images, videos, tutorials, etc. Mike and Steve will be reaching out to the NECCA community for input and guidance as the project moves forward. A board of advisors will ensure that the website is always current and a review committee will review the material before it goes live on the site. Congratulations to Mike and Steve, and to NECCRF. Grant applications are available online and NECCRF looks forward to supporting more regional endeavors in the near future.
After the updates on NECCA’s activities, focus shifted to the meeting’s clinical theme. Adrienne Kovacs, PhD from the adult congenital heart disease program in Toronto gave the keynote address: “Transition of Care.” Adrienne provided terrific insights and strategies for developing a successful transition process. Following the keynote address Ann Marie Valente presented results from NECCA’s regional ACHD survey. These results served as the starting point for a vibrant discussion of regional needs and potential strategies for developing a regional approach to the transition process.
The meeting reconvened after a wonderful outdoor lunch overlooking the Long Island Sound. This year’s new Open Table format provided an hour’s time for members to wander and congregate amongst 3 discussion tables. One table presented information on the ACC’s Provider Action for Treating Congenital Hearts (PATCH) program and was manned by Ami Bhatt and Mike Landzberg. Felice Heller staffed another table and provided information and ideas for developing an effective transition of care process. She also recruited members for a working group to carry the development process forward. Throughout the hour Dr. Sanders displayed heart specimens that exemplify some common forms of adult congenital disease.
A lively panel discussion inspired by representative ACHD cases started off the afternoon sessions. Scott Yeager moderated the session and kept the “regionality” of both the issues and the potential for solutions in focus for the group.
The afternoon closed with two breakout sessions. Ideas and energy from the panel discussion were carried forward into a session on building regional resources for the care of ACHD patients. First steps in the development process were defined including the need for a detailed “regional ACHD needs assessment.” Ami Bhatt will lead this effort. In addition, a working group focused on optimizing the transition process was discussed. Felice Heller will be organizing a working group to take up this issue with the goal of developing a “NECCA approach.”
Overall the meeting was a huge success and truly marked a turning point for NECCA. Our organization is broad, cohesive, energized, and turning its focus to important issues facing congenital heart disease patients and practitioners throughout the region.

Group photo from the 2011 Annual Meeting



Annual Meeting Summary Slides courtesy of Naomi Gauthier, MD


Group photo from the 2010 Annual Meeting

2010 Annual Meeting Executive Summary

2nd ANNUAL NECCA MEETING
23 OCTOBER 2010
EXECUTIVE SUMMARY

Greeting Colleagues:

We are pleased to provide you with this brief summary report on the 2nd annual NECCA meeting held Saturday, October 23, 2010 in York Harbor, Maine. Over 40 people were in attendance at the spectacular seaside setting. The meeting was energetic and productive. Full meeting minutes will be sent in a separate email.

1. Introduction:
Set stage for defining NECCA in terms of its 5 interrelated domains and picking first projects together. Mission, logo, and goals were reviewed. Relevancy of NECCA to member’s practice was stressed.

2. Keynote Speaker: Dr. Steve Colan- “Maintenance of Certification.”
Dr. Colan gave a very informative and well received talk. He provided an overview of the history of the American Board of Pediatrics with a focus on it role as a certifying body. He went on to discuss the MOC process in detail. He highlighted the ongoing development between participation in the MOC process and state licensure, such that state licensing will soon be predicated on maintaining board certification. These developments have brought the MOC process to the fore. His talk, along with slides, will soon be available on the NECCA website. Importantly, requirements for MOC (and likely licensure) have significantly changed for all of us. MOC still requires a “closed book” exam but now only every 10 years, but the challenge for all of us will be to join and demonstrate involvement in approved QI activities and CME every 5 years. Individual practitioner’s requirements and timeline for completion will depend on the date of their last recertification.

ACTION STEPS:

1. ALL members should check their profiles on the ABP website (www.ABP.org) ASAP to find out their individual requirements and timeline.

2. NECCA will determine how it can assist members with the MOC process. NECCA may be able to act as a conduit to help members identify and participate in sponsored QI projects relevant to pediatric cardiologists.

3. Web Site Development
David Kane demonstrated the NECCA website (www.NEHearts.org) and addressed potential future functionality. Areas for Research, Advocacy, and Education have been created. Members from each of NECCA’s subcommittees will determine how to utilize these areas. David is able to update and configure the site and can assist members in adding material. The website contains an active member list with email addresses.

4. Breakout Sessions:
a. Quality Improvement
The Quality Improvement Subcommittee discussed the attributes of a good QI project, as well as the need for QI for all practitioners and ways that MOC qualifying projects could be attained. We agreed on the following 12 month goals: 1) Implement the Chest Pain SCAMP at as many NECCA sites as possible, some sites to use as a practice guideline, others to actually collect the data for analysis. For the time being, data collection will be on paper forms. 2) Begin development of a NECCA Syncope SCAMP, with first steps to include careful review of literature and outlining plausible outcomes. 3) Agreed on a conference call to review progress and action steps the first week in December.

b. Research
The Research Subcommittee settled on the creation of several, short clinical scenarios to be circulated to the active and potential NECCA membership. The intent is to document current clinical practice, test utilization, follow-up schedules and management recommendations. This simple project will allow NECCA to demonstrate the ability to gather regional clinical data, and should be useful historical information when evaluating clinical guidelines and in discussions with insurers. We expect to distribute the survey in January, 2011. With NECCRF funds now available, we hope that there will be a simultaneous, separate clinical research project in progress prior to next year’s October meeting.

c. Advocacy/Education
This subcommittee meeting focused primarily on physician advocacy and physician education. The subcommittee laid out two short term goals: 1) explore issues related to prior authorization requirements, particularly with regard to echocardiography; and 2) develop a congenital cardiology CME program to be added as a component of NECCA’s annual meeting. The subcommittee will take the following first steps: 1) review and summarize current preauthorization requirements and distributed to NECCA’s membership for comment; 2) survey NECCA’s membership with regards to test utilization for common lesions (this work will overlap with the research subcommittee’s plans and may be performed jointly); 3) identify a CME sponsor as a first step in the development of an annual CME congenital cardiology CME program.

d. NECCA Operations
The goals of this group were to review governance structure and discuss membership benefits and constraints. The committee will draft by-laws to flesh this out. Additionally, communication via the website to members was discussed. Information about this meeting and NECCA endeavors will be disseminated via the website as well as direct email. The various committee goals and members will be listed and the highlights of Steve Colan’s MOC talk and other info will also be included for members to view. There were early discussions about participation in SCAMPS as a members-only benefit. Additionally, use of the Member’s Bulletin on the website will be enhanced and promoted.

5. NECCRF RFP
Scott Yeager presented NECCRF website (www.neccrf.org). Now officially ready to accept requests for grants. Funds can potentially be used for research projects, support of QI projects, database infrastructure, or anything that falls under mission statement to improve care for patients with congenital heart disease.

ACTION STEPS:

1. See website for application materials and process. Rolling grant submissions with applications considered starting Nov 1, 2010.