Nephrotic Syndrome，Idiopathic, Nephrotic Syndrome in Children, Nephrotic Syndrome, Minimal Change
Conditions
Brief summary
CHILDNEPH is a pan-Canadian project to observe clinical care for children with nephrotic syndrome. Previous studies have indicated that there is wide practice variation in how health care providers treat this remitting and relapsing disease of childhood. The disease mechanism is not yet understood, and long-term use of steroids can affect children's health. This study involves assessment of routine clinical care and establishing a long-term patient registry for children with nephrotic syndrome.
Detailed description
CHILDNEPH is an ongoing prospective longitudinal study of children with incident and prevalent nephrotic syndrome. Children are recruited from 12 centres across Canada and followed for at least 30 months. The project starting in August of 2013 with the goal of following 400 patients. Data is collected at enrollment, beginning and end of each relapse, semi-annual visits and end of study. Detailed prescription data is collected regarding glucocorticoids and all second line agents. All relapses are recorded with time to urinary remission of proteinuria. The investigators are moving towards registry based trials to determine optimal treatment protocols for nephrotic syndrome with an overall goal to minimize glucocorticoid exposure, a patient priority.
Interventions
None listed
Sponsors
University of Calgary
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
1 Years to 17 Years
Healthy volunteers
No
Inclusion criteria
* Diagnosis with Nephrotic Sydrome at initial presentation, first or second relapse
Exclusion criteria
* unable to participate in English or French * Nephrotic Syndrome is secondary to other disease * Younger than one year old or older than 17 years
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Association of steroid dose prescribed with relapse rates | 30 months up to 90 months | Total steroid dose prescribed per unit time is determined by the total dose patients are prescribed during observation divided by total number of days on treatment. Dose will always be in mg/m2 prednisone equivalents. The relapse rate is the number of relapses/per person unit time. |
Countries
Canada
Contacts
Primary ContactLaurel Ryan, MFA
Backup ContactManeka Perinpanayagam, PhD
Outcome results
None listed