The National Disease Clusters Alliance (NDCA) was formed out of the urgent need to identify and respond to emerging disease clusters. NDCA is made up of a unique cross-section of representatives ranging from agency, non-profit organizations, community activists, scientists and academia. Currently, there are no government agencies that either track or respond sufficiently to disease clusters in communities.

Definitions: according to the Centers for Disease Control and Prevention (CDC)
A disease cluster is a greater-than-expected number of cases of disease that occurs within a group of people in a geographic area over a defined period of time.

A disease cluster investigation is a review of an unusual number, real or perceived, of health events (for example, reports of cancer) grouped together in time and location.

Need for Action

Community concerns regarding environmentally related disease clusters, such as clusters of cancers, childhood leukemia, ALS, MS, lupus, autism, and other rare diseases, continue to be major public health issues. When disease clusters occur or are suspected by members of a community, community members usually lack the resources, knowledge, skills or funding to identify and resolve the disease clusters. Governmental responses to disease clusters in locations as diverse as Fallon, Nevada, Sierra Vista, Arizona and Sacramento, California have been perceived by impacted communities as insufficient, which often leaves communities frustrated by a perceived lack of responsiveness by governmental entities. Finally, government agencies and communities alike often feel as though they did not achieve the desired results. These horrific health crisis remain unresolved and incomplete with illness and disease continuing on.

Major reports:
America’s Environmental Health Gap: Why the Country Needs a Nationwide Health Tracking Network (2000) The Pew Environmental Health Commission. 21 pages.

Health Tracking And Disease Clusters: The Lack Of Data On Chronic Disease Incidence And Its Impact On Cluster Investigations (2002) US PIRG. 60 pages.

Improving Cancer Tracking Today Saves Lives Tomorrow: Do States Make the Grade? (2003) The Trust for America’s Health (TFAH). 24 pages.

Adequacy of State Capacity to Address Noncommunicable Disease (NCC) “Clusters” in the Era of Environmental Public Health Tracking (2007) A Johns Hopkins University study published in the American Journal of Public Health Volume 97, Number S1. 7 pages.

The 2003 Trust for America’s Health made six recommendations to improve cancer tracking:

• Expand data linkage activities.
• Provide additional funding for cancer tracking.
• Make data available to the public while protecting patient confidentiality.
• Improve reporting time.
• Strengthen public accountability and enforce performance standards.
• Institute of Medicine (IOM) should conduct a study on the federal role in cancer registries.

The 2007 Hopkins study surveyed 50 state departments of health and concluded:

• Clusters are of key concern to communities, yet state-level capacity to address clusters was inconsistent and disjointed.
• Across states, there was no consistent identifiable individual or agency division responsible for addressing disease cluster reports.
• States were hampered by dedicated lack of personnel to address suspected or reported disease clusters, resources, and prescribed protocols, as well as inadequate interagency communication.
• Of the 50 states polled only 15 states have protocols for reporting suspected non-communicable disease clusters to the state health agency, 16 states have protocols for responding to suspected disease clusters and 8 states have protocols for communicating with the public regarding suspected disease clusters.

These reports reveal that there is no consistency from state to state. Further, of the states that do have protocols of response to disease cluster concerns, all use some version of the CDC’s outdated and insufficient 1990 Guidelines for Investigating Clusters of Health Events.

You Can Help
Contact us to find out more about solving existing problems with disease clusters. We seek volunteers, donors, scientific advisors, organizational advisors, cluster advocates and more.

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