Using surveillance to determine the number of individuals with sickle cell disease in California and Georgia, 2005–2016

Aluc, Aika; Zhou, Mi; Paulukonis, Susan; Snyder, Angela; Wong, David C.; Hulihan, Mary M.

doi:10.1080/08880018.2020.1779886

Cited by 2 publications

(5 citation statements)

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“…Despite these challenges, the efforts were continued through donations, and these data have been used to raise SCD awareness and to inform researchers, stakeholders, and clinicians about the natural course of SCD and to highlight the many areas where additional information and follow-up are needed. 20,26,33 Importantly, these findings more clearly demonstrated the health inequities for those living with SCD compared with other similarly severe, inherited, and less-common diseases.…”

Section: Jama Health Forum | Special Communicationmentioning

confidence: 79%

“…The program contributed previously unknown information, such as the incidence and prevalence of SCD in these 7 states and further demonstrated the use, complexity, and limitations of linking multiple data sources-newborn screening, vital records, clinical case reports, and administrative data-for understanding SCD morbidity and mortality trends, clinical characteristics, and health care resource utilization and identifying unmet needs. [25][26][27] Because of limited funding, 24 following RuSH, the CDC's Public Health, Research, Epidemiology, and Surveillance in Hemoglobinopathies (PHRESH) project only continued surveillance work in California and Georgia. Designed to further validate SCD case definitions and data integration methods as well as to disseminate SCD surveillance data, PHRESH refined the surveillance definition of SCD and demonstrated the use and challenges of studying SCD using administrative data.…”

Section: Jama Health Forum | Special Communicationmentioning

confidence: 99%

“…During this 2-year project (2010-2012), 7 states identified and collected data on people living with SCD. The program contributed previously unknown information, such as the incidence and prevalence of SCD in these 7 states and further demonstrated the use, complexity, and limitations of linking multiple data sources—newborn screening, vital records, clinical case reports, and administrative data—for understanding SCD morbidity and mortality trends, clinical characteristics, and health care resource utilization and identifying unmet needs …”

Section: Pilot Scd Surveillance Programsmentioning

confidence: 99%

“…However, the lack of a continuous, legislatively directed funding stream limited the long-term viability of the project as well as the continuous provision of knowledgeable personnel whose roles remained tenuous without a guarantee of funding. Despite these challenges, the efforts were continued through donations, and these data have been used to raise SCD awareness and to inform researchers, stakeholders, and clinicians about the natural course of SCD and to highlight the many areas where additional information and follow-up are needed . Importantly, these findings more clearly demonstrated the health inequities for those living with SCD compared with other similarly severe, inherited, and less-common diseases.…”

Section: Pilot Scd Surveillance Programsmentioning

confidence: 99%

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Improving Outcomes for Patients With Sickle Cell Disease in the United States

et al. 2021

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IMPORTANCEAlthough considered a rare disease with fewer than 200 000 cases annually in the US, sickle cell disease (SCD) is the most common and clinically significant inherited blood disorder in the US and worldwide. Despite the relatively high prevalence of this rare disease, there is a paucity of longitudinal data available to evaluate access to care or to identify quality metrics.OBSERVATIONS This review discusses why systematic data collection for SCD through populationwide surveillance programs can help to facilitate progress in treatment. It also explores the importance of having both a longitudinal clinical registry and a national surveillance program to improve resource utilization, clinical outcomes, and provide an equitable foundation for care. CONCLUSIONS AND RELEVANCEFederal funding should be appropriately allocated to establish and maintain a national SCD surveillance system supported by the Centers for Disease Control and Prevention, as well as a longitudinal registry available at recognized sickle cell centers.

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Section: Jama Health Forum | Special Communicationmentioning

confidence: 79%

Section: Jama Health Forum | Special Communicationmentioning

confidence: 99%

Section: Pilot Scd Surveillance Programsmentioning

confidence: 99%

Section: Pilot Scd Surveillance Programsmentioning

confidence: 99%

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Improving Outcomes for Patients With Sickle Cell Disease in the United States

et al. 2021

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“…9,10 The SCDC program collects health information on all people living with SCD to study long-term trends in prevalence, geographic distribution, treatment, and access to quality care in these 2 states. 11,12 The California and Georgia programs have developed population-based cohorts of people living with SCD by linking multiple state-specific datasets, such as NBS and vital records, clinical databases, and administrative claims. 13,14 These cohorts were developed by using validated surveillance case definitions to identify people living with SCD in each state.…”

mentioning

confidence: 99%

Case Ascertainment of Sickle Cell Disease Using Surveillance or Single Administrative Database Case Definitions

et al. 2023

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Objective: In the absence of access to surveillance system data, single-source administrative databases are often used to study health care utilization and health outcomes among people with sickle cell disease (SCD). We compared the case definitions from single-source administrative databases with a surveillance case definition to identify people with SCD. Materials and Methods: We used data from Sickle Cell Data Collection programs in California and Georgia (2016-2018). The surveillance case definition for SCD developed for the Sickle Cell Data Collection programs uses multiple databases, including newborn screening, discharge databases, state Medicaid programs, vital records, and clinic data. Case definitions for SCD in single-source administrative databases varied by database (Medicaid and discharge) and years of data (1, 2, and 3 years). We calculated the proportion of people meeting the surveillance case definition for SCD that was captured by each single administrative database case definition for SCD, by birth cohort, sex, and Medicaid enrollment. Results: In California, 7117 people met the surveillance case definition of SCD from 2016 through 2018; 48% of this group was captured by the Medicaid case definition and 41% by the discharge case definition. In Georgia, 10 448 people met the surveillance case definition of SCD from 2016 through 2018; 45% of this group was captured by the Medicaid case definition and 51% by the discharge case definition. These proportions differed by years of data, birth cohort, and length of Medicaid enrollment. Practice Implications: The surveillance case definition identified twice as many people with SCD as the single-source administrative database definitions during the same period, but trade-offs exist in using single administrative databases for decisions on policy and program expansion for SCD.

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Using surveillance to determine the number of individuals with sickle cell disease in California and Georgia, 2005–2016

Cited by 2 publications

References 3 publications

Improving Outcomes for Patients With Sickle Cell Disease in the United States

Improving Outcomes for Patients With Sickle Cell Disease in the United States

Case Ascertainment of Sickle Cell Disease Using Surveillance or Single Administrative Database Case Definitions

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