Pediatric Vasculitis Initiative

Description

Childhood chronic vasculitis describes a group of rare life-threatening diseases that have in common inflammation of blood vessels in vital organs such as kidneys, lungs and brain. Most knowledge about them comes from adult patients. Severe disease requires aggressive life-saving treatments with steroids and some cancer drugs which can themselves cause damage, and increase risks of cancer and severe infections. Conversely, milder disease can be treated with less toxic drugs. Different classification and "scoring tools" are used to define the types and severity of vasculitis and to measure damage caused by disease or drugs. These in turn help direct how aggressively to treat a patient and to measure outcome. None of these tools however have been assessed in children and the best balance of disease and treatment risks against outcome for children is not known. Although causes of these diseases in children and adults are probably the same, the effects of the disease and the response (good and bad) to drugs will differ in growing children. Because specialists may see only one new child with vasculitis each year, obtaining enough information to learn about childhood vasculitis requires cooperation. We will use an international web-based registry to which doctors from 50 or more centers can contribute patient data. We will determine the features which help better classify and diagnose children compared to adults. Through the web we will collect and analyze information on patients similarly classified and "scored" so that most successful treatments can be identified. Children with vasculitis are less likely to have diseases associated with aging, alcohol and smoking etc., and therefore may be a better group in whom to study the underlying biology of vasculitis. We will use this opportunity and collect spit, blood and tissue from registry patients for laboratory study with an aim to find biomarkers to better classify, define and direct optimal treatment and outcomes.

Conditions

Wegeners Granulomatosis (Granulomatosis With Polyangiitis), Microscopic Polyangiitis, Eosinophilic Granulomatosis With Polyangiitis, Polyarteritis Nodosa, Takayasu Arteritis, Primary CNS Vasculitis, Unclassified Vasculitis

Study Overview

Study Details

Study overview

Childhood chronic vasculitis describes a group of rare life-threatening diseases that have in common inflammation of blood vessels in vital organs such as kidneys, lungs and brain. Most knowledge about them comes from adult patients. Severe disease requires aggressive life-saving treatments with steroids and some cancer drugs which can themselves cause damage, and increase risks of cancer and severe infections. Conversely, milder disease can be treated with less toxic drugs. Different classification and "scoring tools" are used to define the types and severity of vasculitis and to measure damage caused by disease or drugs. These in turn help direct how aggressively to treat a patient and to measure outcome. None of these tools however have been assessed in children and the best balance of disease and treatment risks against outcome for children is not known. Although causes of these diseases in children and adults are probably the same, the effects of the disease and the response (good and bad) to drugs will differ in growing children. Because specialists may see only one new child with vasculitis each year, obtaining enough information to learn about childhood vasculitis requires cooperation. We will use an international web-based registry to which doctors from 50 or more centers can contribute patient data. We will determine the features which help better classify and diagnose children compared to adults. Through the web we will collect and analyze information on patients similarly classified and "scored" so that most successful treatments can be identified. Children with vasculitis are less likely to have diseases associated with aging, alcohol and smoking etc., and therefore may be a better group in whom to study the underlying biology of vasculitis. We will use this opportunity and collect spit, blood and tissue from registry patients for laboratory study with an aim to find biomarkers to better classify, define and direct optimal treatment and outcomes.

Chronic Childhood Vasculitis: Characterizing the Individual Rare Diseases to Improve Patient Outcomes

Pediatric Vasculitis Initiative

Condition
Wegeners Granulomatosis (Granulomatosis With Polyangiitis)
Intervention / Treatment

-

Contacts and Locations

San Francisco

University of San Francisco, San Francisco, California, United States,

Gainesville

University of Florida, Gainesville, Florida, United States,

Chicago

Comer Children's Hospital, Chicago, Illinois, United States,

Indianapolis

Riley Hospital for Children, Indianapolis, Indiana, United States,

Hackensack

The Joseph M. Sanzari Children's Hospital, Hackensack, New Jersey, United States,

Bronx

Children's Hospital at Montefiore, Bronx, New York, United States,

Akron

Akron Children's Hospital, Akron, Ohio, United States,

Houston

Texas Children's Hospital, Houston, Texas, United States,

Salt Lake City

University of Utah / Primary Children's Hospital, Salt Lake City, Utah, United States,

Seattle

Seattle Children's Hospital, Seattle, Washington, United States,

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility Criteria

    Ages Eligible for Study

    to 20 Years

    Sexes Eligible for Study

    ALL

    Accepts Healthy Volunteers

    Yes

    Collaborators and Investigators

    University of British Columbia,

    David Cabral, MBBS, PRINCIPAL_INVESTIGATOR, University of British Columbia; BC Children's Hospital

    Raashid Luqmani, DM FRCP(E), PRINCIPAL_INVESTIGATOR, University of Oxford

    Dirk Foell, MD, PRINCIPAL_INVESTIGATOR, Universität Münster

    Robert Hancock, PhD, PRINCIPAL_INVESTIGATOR, University of British Columbia

    Colin Ross, PhD, PRINCIPAL_INVESTIGATOR, University of British Columbia

    Study Record Dates

    2025-03