# Examining Mortality Risk and Cause of Death among California's Newborn Screening Identified Cohort with Sickle Cell Trait

> **NIH NIH R21** · PUBLIC HEALTH INSTITUTE · 2021 · $89,207

## Abstract

Project Summary
There is growing concern about the possible health effects of positive sickle cell trait carrier status (SCT), with
the National Collegiate Athletic Association now requiring testing of all Division I, II, and III athletes before they
can play, and special training regimens if players do have SCT. Few large scale studies have been conducted,
and epidemiologic investigations have not been conducted for this condition previously thought to be benign.
We propose looking at mortality and end of life healthcare utilization for a cohort of approximately 140,000
persons identified in California’s Newborn Screening Program from 1990-2018 as having confirmed SCT.
Using validated linking methodology, California Biobank Program (California Department of Public Health) will
link these cases and three matched controls per case with California’s Vital Records Death files. These files
include date of death and an underlying and three contributing causes of death. A secondary linkage, using
Tracking California’s Dynamic Health Data Linkage tool, for those who died will add hospitalization and
emergency department records for the last year of life, improving accuracy of specific cause of death for these
persons. These data will be used to calculate all-cause mortality risk in the SCT population up to age 28 and to
compare causes of death among the case and control populations. Publications, abstracts at major
conferences, and health education materials for lay audiences will be developed and distributed with the
results of these analyses.

## Key facts

- **NIH application ID:** 10102275
- **Project number:** 5R21HL150454-02
- **Recipient organization:** PUBLIC HEALTH INSTITUTE
- **Principal Investigator:** Susan Paulukonis
- **Activity code:** R21 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $89,207
- **Award type:** 5
- **Project period:** 2020-02-10 → 2023-01-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10102275

## Citation

> US National Institutes of Health, RePORTER application 10102275, Examining Mortality Risk and Cause of Death among California's Newborn Screening Identified Cohort with Sickle Cell Trait (5R21HL150454-02). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/10102275. Licensed CC0.

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