The Communications Committee is responsible for communicating information to committee members and potential committee members, along with the management company, about upcoming meetings, symposia, and educational opportunities as well as provide routine updates to members about CNOC initiatives. They will also create and oversee content to communicate to the larger community including member leadership, nonmember providers, and individuals diagnosed with congenital heart disease and their family members. Information may be distributed through several modalities including, but not limited to: email, listserv, website, and/or social media. Contact Committee Chair Jennifer Butcher PhD for information about how to participate in committee activities.
The Community Outreach Committee serves as a resource for developing and disseminating educational materials regarding the neurodevelopmental care of children with CHD and their families to external stakeholder groups, including but not limited to patients, families, primary physicians, and policy makers, and for identifying opportunities to engage diverse stakeholders in activities stemming from CNOC. The Community Outreach Committee is co-chaired by the two Patient/Family Representatives on the Steering Committee. Contact Committee Chairs Amy Basken, MS and Elizabeth Blumenfeld, JD for information about how to participate in committee activities.
The Database Committee is responsible for assuring the quality of the data and facilitate data collection and analyses, modifying the database as the data evolves. The Database Committee will oversee the work of the Data Coordinating Center and lead the RFAs for the management of the Data Coordinating Center every five years. The Database committee will coordinate closely with the Research Committee. Contact Committee Chair Anjali Sadhwani PhD for information about how to participate in committee activities.
The Education and Training Committee is responsible for providing education and training to members and associate members interested in developing a neurodevelopmental follow-up program, developing specific metrics and methodologies for evaluating the training process. The Education and Training Committee will work closely with the Research Committee to assure that the advocated batteries are consistent across sites and over time as much as possible. This committee may explore a possible review process for clinicians who have received training and have passed some evaluation on the recommended battery. Contact Committee Chair Renee Sananes PhD CPsych for information about how to participate in committee activities.
The Program and Meeting Committee supports the development of the agenda/schedule for the biannual CNOC meetings including the Annual Scientific Sessions of the Cardiac Neurodevelopmental Outcome Collaborative, determines the future sites for the Annual Scientific Sessions and serves as a resource to the host institution for the Annual Scientific Sessions. This Committee will include at least one member from the two most recent and the next two host institutions of the annual symposium. Contact Committee Co-Chairs Gil Wernovsky MD or Cheryl Brosig Soto PhD for information about how to participate in committee activities.
- 253 attendees at this year’s scientific sessions, an increase of 25% from 2017
- Finalized dates/location for next year’s scientific sessions – October 11-13, 2019, Toronto
- Formalizing a bidding process for future scientific sessions with detailed responsibilities of the host center
The Publications Committee is responsible for review and approval of all abstracts, presentations and manuscripts for publication. All reviews of abstracts and presentations will be performed and feedback delivered within 14 days of submission to the Publications Committee. All manuscript reviews will be completed within 30 days of submission to the Publications Committee. Contact Committee Chair Karen Uzark PNP PhD for information about how to participate in committee activities.
The Quality Improvement Committee is responsible for the quality improvement agenda of the CNOC. The Quality Improvement committee will collaborate closely with the Database committee to oversee QI projects. In collaboration with the Research Committee, the QI committee will determine how proposed QI and research studies will be submitted, processed and reviewed, and how investigators will receive feedback. They will review all QI-related proposals to the CNOC and will work closely with the Education and Training committee to lead quality improvement initiatives to improve clinical care and outcomes. Contact Committee Chair George Verghese MD MBA for information about how to participate in committee activities.
The Research Committee is responsible for shepherding the collaborative research agenda of the CNOC, which includes the development of data collection and sharing methodology. The Research Committee will review all research proposals to the CNOC, oversee protocol development committees as well as all writing committees, and determine how proposed studies will be submitted, processed, reviewed and how investigators will receive feedback. The Research Committee is expected to closely collaborate with the Database Committee. Contact Committee Co-Chairs Dawn Ilardi PhD ABPP CN and Mike Seed MD for information about how to participate in committee activities.
- CNOC site survey reveals neurodevelopmental evaluation volumes, ages, typical process, neurological data collected, and opportunities for collaboration and growth
- Partnering with ArborMetrix for data management
- Neurodevelopmental test protocols finalized and finalizing data dictionary
- Drafting Project and Ancillary Project Proposal Guidelines
- Preparation underway for data entry start date in early 2019!