Improving SCD Care Using Web-based Guidelines, Nurse Care Managers and Peer Mentors in Primary Care and Emergency Departments in Central North Carolina

About the study

The overall purpose of this proposed study is to improve management of vaso-occlusive
episodes (VOEs) in adult EDs. We aim to implement NHLBI recommendations for VOE treatment by
embedding Individualized Pain Plans (IPPs) in the electronic health record (EHR). The
EHR-embedded IPP will serve as a record of patients’ SCD genotype and will include analgesic
medication recommendations developed by the SCD provider. In this project, we will provide
access to the IPP for both adult patients with SCD and ED providers. The proposed multisite
study will use a pre-post study design, with a core set of mandatory intervention components
and strategies for each participating site and optional components and strategies to allow
for intervention adaptation to local needs and resources. The EHR-embedded IPP will be
available for all adult ED providers to use as their routine practice, and patients will be
invited to participate and enroll in the study. We will use a simplified Technology
Acceptance Model to explain the use of the IPP and the RE-AIM framework to assess the Reach,
Effectiveness, Adoption, Implementation, and Maintenance of the intervention.

Study point of contact

Nirmish Shah, MD
[email protected]
Paula Tanabe, PhD
[email protected]


8 United States sites


18 to 45 Years


Hb SS, Hb SC



Study type








participation requirements

– Age 18 years up to and including 45 years

– English speaking

– Confirmed SCD diagnoses . Confirmed is defined as supported by documentation in the
medical record of a positive test for one of the following : Hb SS, Hb SC, Hb S
-thalassemia, Hb SO, Hb SD, Hb SG, Hb SE, or Hb SF.

– Access to a cellular/mobile smart phone with access to text messaging (either Android
or iPhone acceptable) .

– At least one Vaso-Occlusive Episode (VOE) visit to participating site Emergency
Department (ED) the past 90 days from enrollment

– At least one visit at the study site sickle cell disease clinic within the past 12

– Willing and cognitively able to give informed consent


participation restrictions

– Patient’s sickle cell provider states patient should not have a protocol or should not
be administered opioids



  • Oakland, California, United States, University of California San Francisco, 94609 [Not yet recruiting]
  • Augusta, Georgia, United States, Georgia Regents University, 30912 [Not yet recruiting]
  • Chicago, Illinois, United States, University of Illinois, 60612 [Not yet recruiting]
  • Saint Louis, Missouri, United States, Washington University, 63110 [Recruiting]
  • New York, New York, United States, Icahn School of Medicine at Mount Sinai, 10029 [Not yet recruiting]
  • Durham, North Carolina, United States, Duke University, 27710 [Recruiting]
  • Charleston, South Carolina, United States, Medical University of South Carolina, 29425 [Not yet recruiting]
  • Memphis, Tennessee, United States, St. Jude's, 38105 [Not yet recruiting]
Last updated 2021-01-07