Lupus

Pediatric Alliance for Lupus Initiative

The Pediatric Alliance for Lupus (PAL) initiative focuses on raising awareness and improving diagnosis and treatment of childhood-onset systemic lupus erythematosus (cSLE) among racial and ethnic minorities in three geographic locations in New Jersey – Trenton, Newark-Union, and Edison-New Brunswick.

The PAL seeks to achieve early diagnosis, effective management, and improved health outcomes and health related quality of life for cSLE patients nationwide and in the target areas using a two-pronged approach as follows:

 

Aim 1: Improve Health Literacy

Goal 1: Increase the number of online, age appropriate, culturally and linguistically sensitive resources readily available for patients with cSLE and their caregivers.

Goal 2: Increase nationwide awareness and knowledge among healthcare providers, pediatric and adult rheumatologists (with special outreach to the target areas) of cSLE and age appropriate, and culturally and linguistically sensitive online materials in the National Resource Center on Lupus by the Lupus Foundation of America to educate and support minority cSLE patients and their caregivers.

Aim 2: Enhance the Medical Home for cSLE Patients

Goal 1: Increase the number of healthcare providers in the target areas providing an effective medical home, trained to identify, diagnose, manage, and treat cSLE.

Goal 2: Develop an American Board of Pediatrics Maintenance of Certification Part 4 Quality Improvement curriculum across the target areas to focus on early identification of cSLE; improve practice screening and assessment; anticipatory guidance; diagnose; manage; ensure adherence; and provide resources to patients with cSLE and their caregivers.

Our Partners

L. Nandini Moorthy, MD (MBBS), MS, FAAP, Associate Professor of Pediatrics and Chief, Pediatric Rheumatology Services at Robert Wood Johnson Medical School, Bristol Myers Squibb Children’s Hospital serves as the Principal Investigator for the initiative. Additional partners include:

Lupus Foundation of America

Central Jersey Family Health Consortium

Statewide Parent Advocacy Network

Greater Newark Healthcare Coalition

Trenton Health Team

 Consultants

Harry L. Gewanter, MD

Emily von Scheven, MD, MAS (University of California, San Francisco)

Marisa-Klein Gitelman, MD, MPH (Children’s Hospital of Chicago)

Jennifer Stinson, RN-EC, PhD, CPNP (The Hospital for Sick Children, Canada)

Visit our Resources page for more information and important links.

The PAL initiative was supported by Award Number CPIMP171139 from the Office of the Assistant Secretary of Health (OASH). Its contents are solely the responsibility of the authors and do not necessarily represent the official views of OASH.