Public Health and Surveillance of Rare Childhood Conditions

C.O.R.D. - Rare Disease Day Conference 2016 | Ottawa, ON | March 9, 2016

Jay Onysko, Manager Maternal, Child and Youth Health Unit, Surveillance and Epidemiology Division Centre for Chronic Disease Prevention Public Health Agency of Canada

Outline

•  Public Health Surveillance at the Agency

•  Examples of Surveillance of Rare Childhood Conditions:

•  Canadian Congenital Anomalies Surveillance System (CCASS)

•  Cancer in young people in Canada surveillance system (CYP-C)

•  Canadian Paediatric Surveillance Program (CPSP)

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•  Public health surveillance – a core public health function

•  Based on a Population Health Approach

•  Public health a shared responsibility among the federal government and provincial/territorial governments

•  Other federal organization (CIHI, CIHR, Statistics Canada, etc…) have distinct but complementary roles in health research and monitoring

•  Agency leadership and coordination role in performing national public health surveillance activities

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Public Health Surveillance at the Agency

The role of public health surveillance:

•  Monitor trends in health events (by time, place, person)

•  Help estimate current and future impacts

•  Support creation of policy and programs

•  Facilitate planning

•  Evaluate prevention and control measures

•  Identify cases for further study

….in order to take action

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Overview of the Agency and Public Health Surveillance

Opportunities for public health action: a life-course approach

Social, Genetic, and Environmental Determinants of Health

Risk Factors (physical activity, diet, smoking, alcohol)

Pre-Disease (hypertension, obesity, pre-diabetes, etc)

Disease (type 2 diabetes, CVD, cancer)

Complications & Disability

Death

Health promotion

Primary

prevention

Secondary prevention

Tertiary

prevention

Prenatal Birth Death

Data Analysis and

Interpretation

Communication of information

for Action

Data Collection

Surveillance

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Surveillance Cycle

Surveillance Data Sources

•  Health administration data - Electronic medical records; hospital records; physician billing data

•  Surveys – Canadian Community Health Survey; Canadian Health Measures Survey; Canadian Health Survey of Children and Youth (in development)

•  Registries - Systems specifically designed for surveillance

•  Other secondary sources (e.g., school administration databases)

Canadian Chronic Disease Surveillance System (CCDSS)

Adult Cancer Surveillance Program

Arthritis and Osteoporosis Surveillance Program

Cardiovascular Disease Surveillance Program

Chronic Respiratory Diseases Surveillance Program

Diabetes Surveillance Program

Mental Health -Illness Surveillance Program

Neurological Conditions Surveillance Program

Childhood Obesity Surveillance Program

Cancer in Young People in Canada Surveillance Program (CYP-C)

Canadian Congenital Anomalies Surveillance System (CPSS)

Canadian Paediatric Surveillance Program (CPSP)

Child Maltreatment Surveillance

National Autism Spectrum Disorder Surveillance Program

Injury Surveillance

Centre for Chronic Disease

Prevention (CCDP)

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Surveillance Systems/Programs within the Centre for Chronic Disease Prevention

Canadian Congenital Anomalies Surveillance System (CCASS)

•  Congenital anomalies are a leading cause of infant mortality, morbidity and life-long disability in Canada.

•  CCASS reports prevalence of key congenital anomalies, time trends, national and international comparisons

•  Federal / Provincial / Territorial Collaboration:

–  Hospital Administrative Data & enhanced systems

•  Monitors key categories: (e.g., Down syndrome, neural tube defects, congenital heart defects, orofacial clefts, limb deficiency defects and gastroschisis)

•  Approximately 1 in 25 infants is diagnosed yearly with one or more congenital anomalies

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Canadian Congenital Anomalies Surveillance System (CCASS) – National trends

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Canadian Congenital Anomalies Surveillance System (CCASS) – Policy Links

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KNOWLEDGE MOBILIZATION PUBLIC HEALTH ACTIONS

Monitoring of neural tube defects trends following folic acid fortification

•  Public health strategies, such as folic acid food fortification and supplementation to prevent neural tube defects, have proven successful in Canada

•  The Agency's Healthy Pregnancy Guide provides guidance for optimal pregnancy outcomes

Monitoring of microcephaly •  Trend analysis has supported Agency direction in responding to current international Zika virus – microcephaly trends

•  Starting point for enhanced microcephaly surveillance

Cancer in Young People in Canada (CYP-C) Surveillance Program

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•  A partnership between the Agency and the C17 Council

•  Aims to fill gaps in knowledge and ultimately reduce the burden of childhood cancer in Canada

•  National population-based registry includes all children (age <15) diagnosed with cancer in Canada from 2001 onward

•  Collects detailed information on diagnosis, treatment, outcomes for 5 years after diagnosis

Cancer in Young People in Canada (CYP-C): Data Elements

Demographics Diagnostic Details Time to Treatment Treatment Outcomes

Sex Date of diagnosis Diagnosis

First health care professional contacted

Treatment plan and start date

Organ transplant

Date of birth ICDO-M, ICDO-T and ICCC codes

Date first health care professional contacted

Treatment completion details

Complications

Age at diagnosis Stage at diagnosis Risk

Dates first seen by: oncologist, surgeon, and/or specialist

Chemotherapy and dose

Hospitalizations

Province postal code

Grade Chromosomal testing Metastases and site(s)

Surgery details Relapse

Ethnicity Radiation (intent, type, site)

Vital status

Hematopoietic stem cell transplantation

Height and weight

Incidence rates for all cancers combined, by sex, ages 0-14, 1992-2010

AS

IR (p

er 1

000

000)

- Rates are age-standardized to the 1991 Canadian population. - Analysis by: Surveillance and Epidemiology Division, CCDP, Public Health Agency of Canada - Data sources: Canadian Vital Statistics Death database at Statistics Canada

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Mortality rates for all cancers combined, by sex, ages 0-14, 1992-2010 A

SM

R (p

er 1

000

000)

- Rates are age-standardized to the 1991 Canadian population. - Analysis by: Surveillance and Epidemiology Division, CCDP, Public Health Agency of Canada - Data sources: Canadian Vital Statistics Death database at Statistics Canada

Canadian Paediatric Surveillance Program (CPSP)

•  Joint project of the Canadian Paediatrics Society (CPS), the Agency and Health Canada

•  National collaborative epidemiological research network by and for practitioners

•  Survey-based: Gathers data directly from over 2,500 paediatricians and paediatric subspecialists

•  Rare chronic/infectious diseases/conditions and adverse drug reactions (<500 cases per year)

•  Able to collect data in near real-time; can capture relatively detailed case histories

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Examples of national surveillance studies currently underway:

•  Acute flaccid paralysis (Open / 1996 – 2016)

•  Adverse drug reactions ‒ serious and life-threatening (Open / 2004 – 2016)

•  Lyme disease (Open / 2014 – 2017)

•  Tuberculosis (Open / 2013 – 2016)

•  Hypoglycemia in low-risk term newborns (Open / 2014 – 2016)

•  Listeria in the newborn and early infancy (Open / 2015 – 2017)

•  Sudden unexpected death in epilepsy (Open / 2014 – 2015)

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Canadian Paediatric Surveillance Program (CPSP)

KNOWLEDGE MOBILIZATION PUBLIC HEALTH ACTIONS Vitamin D-deficiency / rickets among children in Canada (2007)

•  Confirmed the importance of reinforcing CPS recommendation that exclusively breast-fed infants and children receive vitamin D supplementation.

Necrotizing fasciitis (2011) •  Provided evidence supporting guidelines for universal childhood varicella immunization program.

Non-type 1 diabetes mellitus (2006 & 2016)

•  Identified obesity/overweight as predisposing factors in nearly all cases of type 2 diabetes in children and youth.

•  Evidence continues to be used by health promotion and disease prevention programs in the Agency and by concerned partners including the CPS and its members

Exposure to detergent packet injuries survey (2014)

•  Attention brought to detergent packets poisonings contributed to industry changes to product packaging and marketing

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Canadian Paediatric Surveillance Program (CPSP) – Policy Links

Thank you

• http://www.phac-aspc.gc.ca/publicat/cd-mc/mc-ec/index-eng.php

• http://www.cpsp.cps.ca/

• http://infobase.phac-aspc.gc.ca/

jay.onysko@phac-aspc.gc.ca

cypc-ccjc@phac-aspc.gc.ca

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Chronic Disease Infobase Data Cubes

•  http://infobase.phac-aspc.gc.ca/ •  Data Cubes are interactive databases that quickly allow users to create tables and graphs in their web browser.

‘Open data’ – Infobase Data Cubes