Data Identification, Collection, and Use Planning Grant

Abstract

PROBLEM:

Traumatic injuries are the major cause of morbidity and mortality among children and adolescents in the United States, resulting in 16,000 deaths, approximately 10 million emergency department visits and 228,000 hospitalizations annually. The estimated direct annual cost approaches $14 billion. Indirect costs, including long term disability and the emotional as well as fiscal impact on families are incalculable. In 2002, there is no single resource for access to aggregate pediatric injury data, instead more than 1800 disparate and individual trauma data registries are currently operating. In order to document progress, evaluate programs, and develop systems and public policies that improve the management and care of children with traumatic injuries, a broad-based, representative, verifiable national trauma data registry for children is needed.

GOALS AND OBJECTIVES:

The primary goal of this project is to plan and design a national data registry for injured children in the United States. The data registry must have the following characteristics: 1) easy access and use for all participants; 2) ease in updating, maintenance, and verification; 3) accommodation of different formats for data entry and export, taking into account existing registries and datasets; 4) flexibility to take advantage of new technology; 5) compliance with data standardization criteria; 6) compliance with federal and state privacy requirements; 7) allow comparisons across defined data elements; 8) capacity for "modular" applications to the aforementioned prospective clinical and epidemiological inquiries; and 9) track usage. A critical component of designing such a system is to develop prospective consensus from the multiple potential users and contributors of data.

The National Trauma Registry for Children Planning Grant guidance divided the development process of a National Trauma Registry for Children into two components: a strategic planning Data Identification, Collection and Use component, and a related operational planning Registry Design and Technology component. This application addresses the Data Identification component and has as its specific objectives to:

1. Establish a multidisciplinary Advisory Council to reach consensus, develop specific recommendations, and generally oversee the work proposed;

2. To develop and prioritize the functionality to be provided by a National Trauma Registry for Children (NTRC);

3. To develop a uniform set of data variables, variable definitions and value labels important to the categorization and description of pediatric trauma;

4. To assess and recommend appropriate measurements to assess functional and rehabilitative outcomes of pediatric injury;

5. To explore and recommend strategies for maintaining a NTRC.

METHODOLOGY:

We will use a consensus based approach using an Advisory Council to develop and prioritize registry functions, establish and approve data registry parameters, including data variables, and oversee the development of all written reports. We also propose to create a Leadership Assembly, representing the broad community of individuals caring for injured children, to provide input and feedback as the Advisory Council considers its recommendations.

COORDINATION:

The Advisory Council and Leadership Assembly will provide feedback to the various state, local, and national health agencies involved in the care of injured children. We will periodically distribute reports as the development process moves forward.

EVALUATION:

We will evaluate progress toward achieving each objective on a quarterly basis. This will take the form of a written report that will be distributed to all Advisory Council and Leadership Assembly members, along with a form for feedback and comment. These performance report cards will be analyzed and used to make any necessary adjustments to the timeline or to the proposed methods.

KEYWORDS: strategic planning; data; needs assessment; quality assurance; research; injury; trauma systems; project evaluation