The Born in Bradford project With focus on congenital and rare genetic conditions Peter Corry 14 Sept 2017

Dark Satanic Mills?

Bradford City Hall in 2017

Summary of talk Background to children’s health in Bradford The Born in Bradford project Findings about congenital conditions

Bradford demographics Population 360,000 Children (up to 18) 106,000 Annual births 6,000 Pakistani origin births 45% Infant Mortality Rate 8.1/1,000 Infant Mortality Rate (UK) 4.6/1,000

Migration to Bradford 19th Cent. From countryside, Ireland and some Germans 1940s. From Eastern Europe and Italy 1950s – 1990s. From Indian subcontinent, with some from West Indies/East Africa 2000s. From Eastern Europe, asylum seekers and others

Health and social issues. Relative socio-economic deprivation Old overcrowded housing stock Relatively limited access to well paid jobs Relatively poor academic achievement Young growing population Reduced life expectancy

2003 Infant Mortality Rate Bradford 9.0/1000 UK 5.4 /1000 Bfd White British 7.1/1000 Bfd Pakistani 12.9/1000 Sweden 2.57/1000 USA 5.98/1000 Pakistan 69.7/1000 Afghanistan 144.01/1000

Born in Bradford 13,773 mothers recruited in pregnancy at 26-28 weeks gestation 13, 858 babies (live and stillbirths) Born between 2007 and 2011 Only if registering at Bradford Royal Infirmary Excludes: those choosing to deliver elsewhere, those having termination after ante natal diagnosis

Strong community involvement

Born in Bradford research. Nutrition and diet Growth + obesity Exercise Asthma Environment Smoking and alcohol Social gradients: health Mental health Sudden infant death Squints Progress in school Health in school Impact of interventions Rates of consultations Congenital conditions

Some issues Standing desks in classrooms TV and computers Access to outside play and parks Adverse effects near busy roads Co-sleeping Health links to nicotine and alcohol High rates of congenital/genetic conditions

Ethnic variation White British mothers % Pakistani mothers % Smoke in pregnancy 33 Alcohol in pregnancy 43 Married 35 Living with father 71 Married to cousin <1 Smoke in pregnancy 3 Alcohol in pregnancy <1 Married 92 Living with father 93 Married to cousin 63

Increased prevalence in Bradford children of Pakistani heritage Metabolic Deafness Congenital hearts Haemoglobinopathies Coagulation disorders Many AR conditions Neuromuscular Microcephaly Visual impairment PCD Skin conditions Cerebral palsy AR-autosomal recessive

BPSU study 1997 - present Progressive Intellectual and Neurological Deterioration United Kingdom 902 children Bradford postcode 72 children (8% of UK total) British Paediatric Surveillance Unit Bulletin Oct 2006

BPSU 2010 update Bradford (by postcode) 87 Birmingham 67 East London 42 Leeds 38 Median for UK district 9 Verity C, et al ADC (2010)

Neurodegenerative conditions in Bradford children (April 2010) South Asian 47 White British 3 Slovak Roma 2 Total 52 CDC database

Microcephaly in Bradford 44 children 35 congenital, 9 postnatal Congenital: 27 Pakistani 7 White British 1 Bangladeshi Corry P, 2002 Community Genet.

Primary Ciliary Dyskinesia 19 Bradford children, 18 Pakistani and 1 Bangladeshi Prevalence in Bfd Asian children: 1:2,265 Usual prevalence 1:10,000-30,000 Cystic fibrosis clinic now “PCD clinic” O’Callaghan C et al, ADC (2010) 95:51-52.

Infant mortality rates due to congenital anomalies by ethnic group per 1,000 live births for babies born in England and Wales in 2005 Moser K, et al. Health Statistics Quarterly Autumn 2008; 39: 22-31.

Congenital conditions “A congenital anomaly is defined as any defect present at delivery, probably originating before birth, and includes structural, chromosomal, genetic and biochemical defects and malformations”. BINOCAR - British and Irish Network of Congenital Anomaly Research Database

BiB congenital anomaly report Bradford 305/10,000 livebirths United Kingdom 165/10,000 livebirths Consanguinity (all ethnicities) relative risk X 2.19 Age >34 (White British) relative risk X 1.83

Cousins and Clans Consanguinity. A union between 2 people who are related as second cousin or closer. Endogamy. A union between 2 people from the same group. (Tribe, religious sub-group, isolated community, class, etc.)

Some examples Royalty Geographically isolated (islands, Alpine valleys, rural Finland) Religious groups (Amish, Ashkenazi Jews) Rich magnates Castes in India It’s commoner than you think

Conclusions (1) Within UK, rates of congenital conditions may vary significantly with different marriage patterns and increasing maternal age Services need to be sensitive to our diverse population’s needs Public Health needs to have accessible information available

Conclusions (2) Knowledge gained though study of clusters of rare conditions may advance medical science Collaboration with countries of origin may speed knowledge and benefit patients Working together for our children may lead to better community cohesion.

Thank You

Deafness in Bradford children 2.3/1,000 Deafness in UK children: 1.0/1,000 Deafness in Bradford Asian children: 4.69/1,000 Deafness in Bradford non-Asian children: 1.38/1,000 Parry G, MSc 1995

Visual Impairment High prevalence of visual impairment in Bradford Asian children Schwarz K, Yeung S, Symons N, Bradbury J. Eye (2002) 16(5):530-4