Sickle cell improvement across the NorthEast ReGion through Education (SiNERGe) is a multi-state collaborative dedicated to improving access to high quality, coordinated and comprehensive care for individuals with sickle cell disease (SCD) throughout the Northeastern United States, Puerto Rico, and the U.S. Virgin Islands. This Treatment Demonstration Project is funded by the Health Resources and Services Administration (HRSA). SiNERGe includes sickle cell providers in Connecticut, Delaware, Maine, Maryland, Massachusetts, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, Vermont, Virginia, West Virginia, Washington DC, Puerto Rico and the U.S. Virgin Islands.
This collaborative has four overarching goals:
- Increase the number of clinicians knowledgeable about the medical care of SCD patients;
- Improve the quality of care provided to individuals with SCD;
- Improve care coordination with other providers;
- Collect high quality patient-level data, prospectively, to improve adherence to evidence-based care, not just in the NE region, but nationally.
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SiNERGe Lead Community-Based Organization
William E. Proudford Sickle Cell Fund, Inc.
| Grant Role | Personnel | Academic Title | Faculty Profile Link |
|---|---|---|---|
| Principal Investigator | Rosalyn Stewart, MD, MS, MBA | Professor of Medicine | Rosalyn Walker Stewart, M.D., M.B.A., M.S. Professor of Medicine Johns Hopkins Medicine |
| Co-Principal Investigator | Sophie Lanzkron, MD, MHS | Professor of Medicine | Sophie Miriam Lanzkron, M.D., M.H.S. Professor Thomas Jefferson University |
| Project Manager | Vinal Menon, PhD, MS | Research Associate in Medicine | Vinal Menon, PhD Johns Hopkins Medicine |
| Research Coordinator | Kelechi Eluchie, MPH, MLS(ASCP)CM, CSM | Sr. Research Program Coordinator | |
| Research Coordinator | Sharon Moyo-Songonuga, MPH, CPH | Sr. Research Program Coordinator | |
| Research Assistant | Meemansa Menon, MCom | Research Assistant |
Project ECHO® for SCD
Launched in 2015, Johns Hopkins was the first site to employ the ECHO (Extension for Community Health Outcomes) model for SCD. Our Sickle Cell ECHO Clinic uses the hub-and-spoke model, established at the University of New Mexico, to foster knowledge-sharing networks led by a panel of experts. Each ECHO session is held virtually thus increasing outreach to providers across the country interested in gaining knowledge and best practices in SCD care and management. Our ECHO panel consists of pediatric and adult hematologists, a primary care and coordination expert, and pain and psychiatric experts. During each session, two de-identified cases are presented by the spoke participants from their own institutions followed by recommendations, by the hub expert panel, on disease care/management and best practices. In between the two cases, there is a brief didactic session delivered by leading researchers and clinicians on various aspects of SCD treatment and research.
Johns Hopkins Sickle Cell Disease ECHO® is hosted every Wednesday, 1 p.m. EST.
Sickle Cell Disease Advanced Practice Providers Opportunities Resources and Training (SAPPORT) Program
The SAPPORT program is a self-paced, one-year curriculum for advanced practice providers (APPs) who are interested in pursuing additional training in the clinical management of SCD. Established in 2021, the SAPPORT program seeks to increase the number of SCD APPs nationally, connect new SCD APPs with SCD experts at regional comprehensive sickle cell centers, and build peer networks for ongoing support. Successful completion of the program requires participation in monthly sickle cell ECHO sessions for APPs (details below), an in-person observership which can be completed at a local institution or at a regional comprehensive sickle cell center (SiNERGe may be able to financially support observership opportunities), and self-study with a comprehensive online lecture curriculum. Graduates of the SAPPORT program will receive a certificate of completion from the National Alliance of Sickle Cell Centers.
SAPPORT ECHO Sessions
Established in 2021, the SAPPORT ECHO is an extension of the SAPPORT program but is not exclusive for participants of the program. All APPs who provide care for patients with SCD are welcome and encouraged to participate. The ECHO includes an educational didactic in addition to case presentations from APPs throughout the country. These sessions can also be used for SAPPORT program members as credit towards SAPPORT certification.
SiNERGe SAPPORT ECHO is held monthly on the third Thursday at 12pm EST.
Additionally, the Southeastern collaborative, EMBRACE, hosts a monthly SAPPORT ECHO on the first Wednesday at 3pm CST/4pm EST.
SQUAD
The Sickle Cell QUality Improvement AcaDemy (SQUAD) focuses on improving the quality of care provided to individuals with SCD. The program is hosted by Johns Hopkins University School of Medicine/SiNERGe, along with the Hemoglobinopathies National Coordinating Center (HNCC). SQUAD’s curriculum is delivered by the Johns Hopkins Armstrong Institute for Patient Safety and Quality. SQUAD participants will develop competencies necessary to design, and execute interventions to improve SCD care delivery while promoting safe and high-quality care in their home health care systems. Participants will complete and report activities associated with QI learning objectives at each session. The focus will be on improving reliability through process design, building a culture of reliability and leveraging human factors by creating intuitive processes that help practitioners do the right thing. With synchronous and asynchronous components offered, participants complete activities associated with QI in a supported environment.
The scheduled SQUAD Meetings are:
- Monthly Didactic Session: 2nd Fridays, 3:30-4:30pm, EST
- Monthly QI Coaching Calls (provided by HNCC): 1st Thursdays, 3:00-4:00pm, EST
GRNDaD Speaks!
GRNDaD Speaks! is a monthly virtual speaker series with a broad spectrum of SCD-focused topics geared towards clinical and basic science researchers in the field of SCD care.
GRNDaD Speaks! is held monthly on the second Monday of each month, from 11:30am – 12:30pm, EST.
GRNDaD Registry
Globin Research Network for Data and Discovery (GRNDaD) is a multisite registry developed by internationally recognized physicians who provide care for both children and adults with SCD. The goal is to collect longitudinal data on a cohort of people living with SCD to better understand how clinical characteristics predict outcomes. GRNDaD also collects patient reported outcomes including surveys on health-related quality of life and information on pain and fatigue. Another major goal of GRNDaD is to use the data collected for quality improvement and assess how sites are doing adhering to guideline recommendations. We then will use this information to develop appropriate interventions to improve adherence to recommendations which will lead to improved outcomes for this population.
If you are a clinic that takes care of people living with sickle cell disease and would like to inquire about joining as a GRNDaD site please email us at [email protected] or visit https://grndad.org/index.html.