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

Status: Recruiting
Location: See all (32) locations...
Study Type: Observational
SUMMARY

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.

Eligibility
Participation Requirements
Sex: All
Maximum Age: 20
Healthy Volunteers: t
View:

• Diagnosed with ANCA-associated vasculitis (AAV: such as Granulomatosis with Polyangiitis (GPA), Eosinophilic Granulomatosis with Polyangiitis (EGPA) and Microscopic Polyangiitis (MPA)), Primary Angiitis of the Central Nervous System (PACNS), Unclassified vasculitis, Takayasu's Arteritis (TA) or Polyarteritis Nodosa (PAN) before age 18

• Healthy adult or child

Locations
United States
California
University of San Francisco
RECRUITING
San Francisco
Florida
University of Florida
RECRUITING
Gainesville
Illinois
Comer Children's Hospital
RECRUITING
Chicago
Indiana
Riley Hospital for Children
RECRUITING
Indianapolis
New Jersey
The Joseph M. Sanzari Children's Hospital
RECRUITING
Hackensack
New York
Children's Hospital at Montefiore
RECRUITING
The Bronx
Ohio
Akron Children's Hospital
RECRUITING
Akron
Texas
Texas Children's Hospital
RECRUITING
Houston
Utah
University of Utah / Primary Children's Hospital
RECRUITING
Salt Lake City
Washington
Seattle Children's Hospital
RECRUITING
Seattle
Other Locations
Canada
University of Calgary / Alberta Children's Hospital
RECRUITING
Calgary
IIWK Health Centre
RECRUITING
Halifax
London Health Sciences Centre
RECRUITING
London
Children's Hospital of Eastern Ontario
RECRUITING
Ottawa
Royal University Hospital
COMPLETED
Saskatoon
Janeway Childrens Health and Rehabilitation Centre
ACTIVE_NOT_RECRUITING
St. John's
Hospital for Sick Children
COMPLETED
Toronto
BC Children's Hospital
RECRUITING
Vancouver
Denmark
Rigshospitalet
COMPLETED
Copenhagen
Germany
University Children's Hospital
ACTIVE_NOT_RECRUITING
Münster
India
Sanjay Gandhi Post Graduate Institute
RECRUITING
Lucknow
Thailand
Siriraj Hospital
RECRUITING
Bangkok
United Kingdom
Birmingham Children's Hospital NHS Foundation Trust
RECRUITING
Birmingham
Royal Hospital for Children
RECRUITING
Glasgow
Leeds Children's Hospital
RECRUITING
Leeds
Alder Hey Children's Hospital
RECRUITING
Liverpool
Royal Manchester Children's Hospital
RECRUITING
Manchester
Great North Children's Hospital
RECRUITING
Newcastle Upon Tyne
Nottingham Children's Hospital
RECRUITING
Nottingham
Nuffield Orthopaedic Centre
RECRUITING
Oxford
Sheffield Children's Foundation Trust
RECRUITING
Sheffield
Southampton General Hospital
RECRUITING
Southampton
Contact Information
Primary
Else S. Bosman, PhD
pedvas@cw.bc.ca
Time Frame
Start Date: 2013-01
Estimated Completion Date: 2025-03
Participants
Target number of participants: 1600
Treatments
PEDIATRIC VASCULITIS/PROSPECTIVE
Pediatric patients in this cohort are those diagnosed with vasculitis within 12 months from study entry. Clinical data, blood (RNA, plasma, serum), urine, and saliva (DNA) will be collected at 3 to 5 timepoints: time-of-diagnosis, post-induction, 12-month post diagnosis, disease flare, and remission/post-flare.
PEDIATRIC VASCULITIS/RETROSPECTIVE
Patients in this cohort are those diagnosed with vasculitis more than 12 months from study entry and/or were previously enrolled in the ARChiVe or Brainworks registries. Clinical outcome data will be collected retrospectively. Blood (RNA \& serum), urine, and saliva (DNA) will be collected at 2 timepoints: disease flare, and remission/post-flare.
Sponsors
Collaborators: BC Childrens Hospital Research Institute, University of Oxford
Leads: University of British Columbia

This content was sourced from clinicaltrials.gov