CARRA Childhood Lupus Registry

Disease Area:
Lupus and Related Conditions (SLE/RC)

Biosample Status:
No Biosample

About the CARRA Childhood Lupus Registry

The CARRA Registry is the first childhood lupus registry funded by the Centers for Disease Control and Prevention (CDC) in 2019. This program aims to increase the number of children with systemic lupus erythematosus (SLE) enrolled in the CARRA Registry and collect detailed information about their disease.

With the CDC’s support, we aim to enroll 1,000 participants with lupus in the CARRA Registry to describe the many ways lupus presents itself in children and how doctors treat children with lupus. Researchers are also interested in risk factors that prevent children from getting the right care needed.

This program will collect and review the following:

  • Patient-reported symptoms, like pain.
  • Health care behaviors like medication adherence (how well a patient follows their doctor’s orders).
  • Disease activity in organs affected by lupus (like kidneys).

Findings from this program will transform how doctors diagnose and treat children with lupus. This program can also serve as a model for the future study of other pediatric chronic illnesses.

Study Updates and Findings

About the Participants

  • Children with lupus and/or lupus nephritis. Only children with an official diagnosis of systemic lupus erythematosus (SLE) are added to the CARRA Registry.
  • Children diagnosed up to the age of 18. Children must be under the age of 18 at the time of their diagnosis.
  • Enrolled in the Registry by age 21. Young adults up to age 21 but who were diagnosed prior to age 18 are allowed to be enrolled in the CARRA Registry.

About the Study Team

The Lupus Registry is sponsored in part by the Centers for Disease Control (CDC).

Lead researchers (*Principal Investigators):

  • Aimee Hersh*, MD, University of Utah Hospitals and Clinics
  • Andrea Knight*, MD, MSCE, Toronto Hospital for Sick Children
  • Mary Beth Son*, MD, Boston Children’s Hospital
  • Laura Schanberg, MD, Duke Clinical Research Institute
  • Emily von Scheven, MD, MAS, UCSF Benioff Children’s Hospital

To learn more about this project, please contact [email protected].

Related Research Projects

Disease Area:
Lupus and Related Conditions (SLE/RC)

Child/Adolescent Lupus: Understanding Etiology (CLUE) Study

Study to better understand the biology of lupus through genetics.