# SC-Links - Linking the Sickle Cell Community, Providers and Systems to Improve Sickle Cell Disease Care

> **NIH NIH U01** · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · 2021 · $559,570

## Abstract

Project Summary
This proposal establishes a formal collaborative consortium, SC-Links, that addresses NHLBI's strategic plan
goal to foster improved understanding of the processes involved in translating research into practice for youth
and adults with sickle cell disease (SCD) in the U.S. This population has faced long-standing and pervasive
inequities in accessing preventive care with outpatient providers who are knowledgeable about SCD, and with
accessing consistent, high quality care when seeking treatment in the emergency department (ED) for severe
pain. The consortium brings together the expertise of SCD clinical and health services researchers,
implementation scientists and a range of stakeholders, in multi-level interventions that target individuals,
providers, healthcare systems and communities with the specific aims to: 1a) Establish a common framework
of the problem of SCD care in the region, consider strategies to adapt evidence-based interventions for
meeting unique patient and provider needs and propose feasible healthcare infrastructure enhancements that
can help routinize preventive care for youth and adults ages 15 – 45 years with SCD; 1b) Engage the larger
SCD stakeholder community in a mixed methods needs assessment to identify facilitators and barriers to
preventive and acute SCD care and effective patient self-management; and enroll patients in the SCD registry;
2) Establish a population-based SCD Registry and recruit a minimum of 300 youth and adults in a five county
area (representing important variations in care) in N. California. This cohort will be enrolled in interventions in
Phase II of SC-Links; and 3) Implement and evaluate the impact of the SC-Links intervention components
including: improving operations within SCD and primary care delivery settings to ensure that patients receive
health maintenance and hydroxyurea monitoring according to the NHLBI guidelines; introducing evidence-
based health coaching to engage patients, identified through the registry, as in need of primary or SCD
outpatient care; and implementing a standard order set in participating EDs to improve timely assessment and
treatment of acute SCD-related pain. The target population for these interventions is 605 youth and adults with
SCD in the region. The research uses evidence-based models not previously applied to SCD research, to
inform understanding of barriers/enablers to shape intervention components and to assess population health
measures such as effectiveness at reaching a wide range of clinical sites and representativeness of the
registry sample. The project draws on a newly established statewide longitudinal SCD surveillance system and
incorporates measurement that is harmonized across studies. The research uses the highest level of
randomization feasible, including the novel stepped-wedge cluster study design to introduce standard order
sets for SCD pain in the ED. By using established and innovative approaches to theory, measurement an...

## Key facts

- **NIH application ID:** 10197194
- **Project number:** 7U01HL134007-06
- **Recipient organization:** UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
- **Principal Investigator:** Marsha J Treadwell
- **Activity code:** U01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $559,570
- **Award type:** 7
- **Project period:** 2016-08-05 → 2024-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10197194

## Citation

> US National Institutes of Health, RePORTER application 10197194, SC-Links - Linking the Sickle Cell Community, Providers and Systems to Improve Sickle Cell Disease Care (7U01HL134007-06). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10197194. Licensed CC0.

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