Levels of Service
Patient and Caregiver Outcomes in Rare Disease services are provided on a tiered basis.
Tier 1: Consultation and Initial Planning
Tier 1 services are designed to determine the need for PCORD services, rationale for a registry, and likelihood of success. The service coordinator will meet with interested investigators to discuss topics such as the disease of interest, any existing registries, local expertise and commitment, existing connections with stakeholder groups, and emerging findings in disease treatment or prevention.
Tier 2: Strategic Planning and Development
The goal of Tier 2 services is to provide more targeted support to projects for which there is a clear justification and where success is potentially achievable. The service coordinator will work with interested investigators to develop a strategic plan, including a detailed set of goals, objectives, and strategies. At the conclusion of Tier 2, investigators should have a clear commitment to establish a registry.
Tier 3: Special Projects
The goal of Tier 3 services is to provide support to especially promising projects. PCORD will provide key support and technical assistance to create a registry, enroll participants, and conduct a pilot test to provide evidence in support of using the registry as the basis for extramural research applications. A maximum of one to two Tier 3 projects will be supported in any given year.