Turning great ideas into healthier communities

Susan Paulukonis, MA, MPH

Susan Paulukonis is a rare disease epidemiologist, focused on public health surveillance of non-reportable diseases of significant impact and their effect on the people living with them. Health disparities within the populations living with these diseases or across similar conditions are of special interest in her work. 

Beginning in 2006, Ms. Paulukonis transitioned from earlier work in educational research to the study of sickle cell disease, a severe and life-threatening genetic condition. She managed the first public health surveillance programs for sickle cell and thalassemias, a related genetic hemoglobin disorder, beginning in 2010. She has been PI for the California Sickle Cell Data Collection Program at Tracking California since 2015, with additional funding for this work received in 2019 from the state of California. She and Tracking California received funding to conduct surveillance for sickle cell trait in California in 2020. She was also program manager for the Metropolitan Amyotrophic Lateral Sclerosis Surveillance Program in California (2012-2014). She is also responsible for surveillance of harmful algal bloom-related illness in the state, reporting cases to the CDC via the One Health Harmful Algal Bloom System in collaboration with the State Water Resources Control Board and the Office of Environmental Health Hazards Assessment. She works with a great team to gather data on these conditions and make information relevant to those who can use it.

Ms. Paulukonis received a BA in History and an MA in Educational Technology from San Francisco State University, and an MPH degree in Epidemiology and Biostatistics from the University of California, Berkeley. She resides in Atlanta, GA, and makes program-related visits to California frequently.

Capacity Building for Sickle Cell Disease Surveillance

Funded by the Centers for Disease Control and Prevention, this one year effort provides technical assistance to 7 states that are seeking to establish a sickle cell disease surveillance system similar to California's SCDC Program. Partners in this work are the Georgia Health Policy Center (which conducts the SCDC program in Georgia), and the CDC. This work also supports the development of a sophisticated data linkage system for rare disease surveillance.

Harmful Algal Bloom Health Impact Reporting

As a part of the California Environmental Health Tracking Program (CDC funding), we partner with the state Office of Environmental Health Hazard Assessment, the State Water Resources Control Boards, the Department of Fish and Wildlife, and the California Poison Control System to identify and investigate cases of human, domestic animal, and wildlife health impacts associated with exposure to freshwater algal blooms. These are reported to the CDC's One Health Harmful Algal Bloom System (OH HABS).

Identifying Patients with Thalassemia

We are working with researchers at UCSF Benioff Children's Hospital Oakland and Children's Hospital of Oakland Research Institute to determine ways of identifying persons with an elevated probability of having thalassemia (a genetic hemoglobin disorder often not identified at birth but with serious health implications over the life course). This work is funded and directed by the Centers for Disease Control and Prevention.

Metropolitan Amyotrophic Lateral Sclerosis Surveillance

Funded by the Agency for Toxic Substances and Disease Registry, this effort gathered data from every neurology practice in the San Francisco Bay Area and Los Angeles County to determine the incidence and prevalence of ALS in these areas. These data were used to validate the national ALS registry.

Sickle Cell Data Collection Program

The California Sickle Cell Data Collection Program is funded by CDC Foundation - its aim is to create a public health surveillance system at the state level to track health impacts for all those with SCD, including adults and children, those receiving high quality specialty care and those without access. We use these data to inform policy makers, researchers, and those with the disease, to improve health outcomes and quality of life.

Sickle Cell Trait Pilot Surveillance

Funded by the National Institutes of Health, this grant supports a collaboration with the CA Dept of Public Health's Genetic Disease Screening Program to link the state's newborn screening identified cases of sickle cell trait (the carrier status for parents of those with sickle cell disease) to vital records data. This effort, if successful, will set the stage for linking these data to health outcomes data to better understand health impacts of sickle cell trait.

State Funding for Sickle Cell Disease Surveillance

Governor Newsom signed into law state-appropriated funding to support sickle cell disease surveillance in 2019. These funds support expanded data collection and linkage, and increased staff time for analysis, health education, and collaboration among stakeholders.


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