Indiana Sickle Cell Data
Collection (IN-SCDC)
Dashboard

Background

Sickle Cell Disease (SCD), the most common monogenic disorder in the United States, refers to a collection of inherited red blood cell disorders that affect an estimated 100,000 people in the United States. Prior published estimates suggested that approximately 1,200 individuals live with SCD in Indiana. In 2023, the Indiana Sickle Cell Data Collection (INSCDC) program found that nearly 1,700 people with SCD reside in Indiana. Additionally, Indiana’s newborn screening program (NBS) identifies approximately 35 infants with SCD each year.

SCD has a profound effect on quality of life. Adults with SCD score significantly worse on quality-of-life scales than the general U.S. population, reflecting the complexity of this disorder and its effects on the multiple facets of an individual’s life. Although universal newborn screening (NBS) and preventative treatments effectively eliminated early childhood mortality in the U.S., patients with SCD continue to experience increased morbidity and premature mortality.

In 2019, the IN SCDC, participated in the CDC’s SCD surveillance capacity building program. This program established a framework for collaboration and alignment of governance among multiple stakeholders to enable improved understanding of the SCD burden and improvement of SCD care in Indiana. In 2020, IN SCDC received a 3-year grant from the CDC to collect, analyze, and disseminate aggregate SCD data as part of the Sickle Cell Data Collection program. After receiving the 3-year grant, IN SCDC created a multidisciplinary team, collected, and reported SCD data from 2015-2020, created a fact sheet of SCD data for Indiana, published a manuscript on the methodology of the data collection, co-authored a manuscript on SCDC working with community-based organizations and members of other SCDC sites, and are currently working on creating an online dashboard to disseminate data to the public.

The IN SCDC aims to expand and strengthen a multiple-source, longitudinal surveillance system for individuals with SCD in Indiana and contribute to a nationwide SCD surveillance database. At a state level, these data will promote targeted education campaigns, describe pertinent social determinants of health, and identify gaps in care to drive policy change and allocate resources for this underserved community. This proposal describes how IN SCDC will collect, analyze, and distribute data across multiple sectors, develop new partnerships, provide mentorship, and inform policies supporting the SCD community to address health disparities, social determinants of health, and barriers to care to improve quality of life for persons with SCD.

Cohort Definition

This cohort includes individuals from the Indiana Network for Patient Care (INPC) with a diagnosis of Sickle Cell Disease between January 1, 2015 and December 31, 2023 (incremental refreshes will be done on a annual basis).

Criteria SCD diagnoses:

ICD 9 Codes

• 282.6 – Sickle Cell Disease unspecified
• 282.61 – Hb-SS without crisis
• 282.62 – Hb-SS with crisis
• 282.63 – Sickle Cell/Hb-C disease without crisis
• 282.64 – Sickle Cell/Hb-C disease with crisis
• 282.68 – Other Sickle-Cell disease without crisis
• 282.69 – Other Sickle-Cell disease with crisis
• 517.3 – Acute Chest Syndrome
• 289.52 – Splenic sequesation
• 282.41 – Sickle-cell thalassemia without crisis
• 282.42 – Sickle-cell thalassemia with crisis
• 282.4 – Sickle-cell thalassemia

ICD 10 Codes:

• D57.0 – Hb-SS disease with crisis
• D57.00 – Hb-SS disease with crisis unspecified
• D57.01 – Hb-SS disease with acute chest syndrome
• D57.02 – Hb-SS disease with splenic sequesation
• D57.1 – Sickle-cell disease without crisis
• D57.2 – Sickle-cell/Hb-C disease
• D57.20 – Sickle-cell/Hb-C disease without crisis
• D57.21 – Sickle-cell/Hb-C disease with crisis
• D57.211 – Sickle-cell/Hb-C disease with acute chest syndrome
• D57.212 – Sickle-cell/Hb-C disease with splenic sequesation
• D57.219 – Sickle-cell/Hb-C disease with crisis unspecified
• D57.4 – Sickle-cell thalassemia
• D57.40 – Sickle-cell thalassemia without crisis
• D57.41 – Sickle-cell thalassemia with crisis
• D57.411 – Sickle-cell thalassemia with acute chest syndrome
• D57.412 – Sickle-cell thalassemia with splenic sequesation
• D57.419 – Sickle-cell thalassemia with crisis unspecified
• D57.8 – Other sickle-cell disorders
• D57.80 – Other sickle-cell disorders without crisis
• D57.81 – Other sickle-cell disorders with crisis
• D57.811 – Other sickle-cell disorders with acute chect syndrome
• D57.812 – Other sickle-cell disorders with splenic sequesation
• D57.189 – Other sickle-cell disorders with crisis unspecified