About The Coalition

To fulfill its mission, the Coalition will work together in accordance with the following principles and ground rules:

• The Coalition membership will be limited to medical society-sponsored clinical data outcomes registries
• The Coalition will work in a collaborative fashion to share information on legal and policy issues that are hindering the development and operations of clinical data registries or that could help facilitate and promote the growth of such registries.
• The Coalition will work with other groups, such as the National Quality Registry Network and the Surgical Quality Alliance, to identify and understand the legal and policy issues that are affecting registry development and operational/technical success.
• The Coalition will provide its member groups with timely information on policy discussions and developments affecting clinical data registries and share responses to various regulatory and legislative proposals either positively or negatively affecting clinical data registries
• The members of the Coalition will work together to advocate for legal and policy changes that can facilitate or encourage the development of clinical data registries or reduce the legal and administrative burdens or challenges facing them, with such joint efforts including filing group or coordinated comments on regulatory proposals, advocating for legislative changes, and possibly initiating legal challenges. Participation in such efforts will be voluntary for each Coalition member.
• The Coalition will operate and make group decisions on a consensus basis.
• The Coalition members will respect the confidentiality of the group’s discussions and will share the information discussed in Coalition meetings with leaders and colleagues in their represented member groups on a need-to-know, confidential basis, unless the Coalition make clear that such information can be shared more widely.
• Each Coalition group will appoint 2 official representatives to attend Coalition meetings and participate in Coalition activities. These representatives will make participation in Coalition meetings, information sharing, and advocacy efforts a top priority, and will strive to ensure that at least one representative from each group attends each Coalition meeting.