Past Studies

22q11.2 deletion syndrome (JUL 2015 - JUL 2017)

Protocol: 22q11.2
Case Report Form: 22q11.2
Clinical Guidelines: Multisystem features of 22q11.2 

Acute Rheumatic Fever (ARF) (Oct 2007 - Dec 2010)

Protocol: Acute Rheumatic Fever 
Case Report Form: Acute Rheumatic Fever

Anaphylaxis following food ingestion (Jul 2002 - Dec 2003)

Protocol: Anaphylaxis following food ingestion
Case Report Form: Anaphylaxis following food ingestion 

ArthrogRyposis Multiplex Congenita (AMC) (Jan 1996 - Dec 1998)

Final Report: Arthrogryposis Multiplex Congenita  
Protocol: Arthrogryposis Multiplex Congenita  
Case Report Form: Arthrogryposis Multiplex Congenita

CHARGE association (Jan 2000 - Dec 2002)

Protocol: Charge Association
Case Report Form: Charge Association

Childhood Conversion disorder (Jan 2002 - Dec 2003)

Protocol: Childhood Conversion Disorder
Case Report Form: Childhood Conversion Disorder

Childhood Dementia (May 1993 - Jun 1995)

Final Report: Childhood Dementia
Protocol: Childhood Dementia
Case Report Form: Childhood Dementia

CHILDhood Interstitial Lung disease (chILD) (SEP 2014 - APR 2017)

Protocol: Childhood Interstitial Lung Disease
Case Report Form: Childhood Interstitial Lung Disease

Chronic Fatigue Syndrome (Apr 2015 - Apr 2016)

Protocol: Chronic Fatigue Syndrome
Case Report Form: Chronic Fatigue Syndrome
Parent/Carer Information Sheet: Chronic Fatigue Syndrome

Complementary and Alternative Medicines (CAM) (Jan 2001 - Dec 2003)

Protocol: Complementary and Alternative Medicines
Case Report Form: Complementary and Alternative Medicines 

Congenital adrenal hyperplasia (CAH) (Aug 1995 - Dec 1997)

Final Report: CAH
Protocol: CAHPROT
Case Report Form: CAH (Form A)
Case Report Form: CAH (Form B)

Congenital and neonatal varicella (Mar 1995 - Dec 1997)

Final Report: Varicella 1995-1997
Protocol: Congenital and Neonatal Varicella 
Case Report Form: Varicella

CRYOPRYIN ASSOCIATED PERIODIC SYNDROME (CAPS) (JuL 2011)

Protocol: CAPS
Case Report Form: CAPS

Drowning and near drowning (May 1993 - Dec 1996)

Final Report: Drowning and Near Drowning
Protocol: Drowning
Case Report Form: Drowning

Eosinophilic Oesophagitis (EoE) (JUL 2013 - JUN 2014)

Protocol: EoE         
Case Report Form: EoE 
EoE information sheet

Early onset eating disorder (EOED) (jul 2002 - jun 2005)

Protocol: EOED 2002-2005
Case Report Form: EOED 2002-2005 

Early onset eating disorder 2 (EOED 2) (Feb 2016 - mar 2018)

Protocol: EOED 2016-2018
Case Report Form: EOED 2016-2018  

Extrahepatic biliary atresia (May 1993 - Dec 1996)

Final Report: Extrahepatic Biliary Atresia
Protocol: Extrahepatic Biliary Atresia
Case Report Form: Extrahepatic Biliary Atresia 

Fetal Alcohol Syndrome (FAS) (JAN 2001 - dEC 2004)

Protocol: FAS
Case Report Form: FAS

Food Protein Induced Enterocolitis Syndrome (FPIES) (JAN 2012 - APR 2014)

Protocol: FPIES
Case Report Form: FPIES
Parent Information Sheet FPIES

Haemoglobinopathies (HAEM) (JAN 2004 - MAR 2006)

Protocol: HAEM
Case Report Form: HAEM 

Haemolytic Uraemic syndrome (HUS) (JUL 1994 - DEC 2001)

Protocol: HUS
Case Report Form: HUS

Hepatitis C virus infection (HCV) (Jan 2003 - Jun 2008)

Protocol: HCV
Case Report Form: HCV

Hirschprung disease (Jan 1997 - Dec 2000)

Final Report: Hirschprung Disease
Protocol: Hirschprung
Case Report Form: Hirschprung

Hyperinsulinaemic hypoglycaemia of infancy (HI) (JAN 2005 - APR 2006)

Protocol: HI
Case Report Form: HI

Intussusception (IS) (May 2007 - May 2010)

Protocol: IS
Case Report Form: IS 

Invasive haemophilus influenzae infection (Jan 1998 - Dec 2000)

Final Report: Invasive Haemophilus Influenzae Infection
Protocol: Hib
Case Report Form: Hib 

JAPANESE ENCEPHALITIS VIRUS IN CHILDREN < 18 YEARS OLD

Study information sheet: Japanese Encephalitis Virus

Printable PDF Case Report Form: Japanese Encephalitis Virus

Kawasaki disease (May 1993 - Jun 1995)

Final Report: Kawasaki Disease
Protocol: KD
Case Report Form: KD 

MECP2 DUPLICATION SYNDROME (MEPC2)

Protocol: MECP2
Case Report Form: MECP2
Parent/Carer Information Sheet MECP2

MICROCEPHALY IN CHILDREN AGED < 12 MONTHS (MCPH) (JUN 2016 - JUL 2018)

Protocol: Microcephaly
Case Report Form: Microcephaly

MONTELUKAST AND NEUROPSYCHIATRIC EVENTS (MAY 2020 - JANUARY 2022)

Study Information Sheet:  Montelukast and Neuropsychiatric Events 
Printable PDF Case Report Form:  Montelukast and Neuropsychiatric Events

Munchausen by proxy syndrome (Jan 2000 - Dec 2003)

Protocol: Munchausen by Proxy
Case Report Form: Munchausen by Proxy

Neonatal/Infant Group B Streptococcal Sepsis (GBS) (Jul 2005 - Jun 2008)

Protocol: GBS
Case Report Form: GBS 

Nephrotic syndrome (Jul 1998 - Jun 2000)

Final Report: Nephrotic Syndrome
Protocol: Nephrotic Syndrome
Case Report Form: Nephrotic Syndrome 

Neuromuscular Disorders of Childhood (NMD) (Jan 2007 - Dec 2009)

Protocol: NMD
Case Report Form: NMD

Non Tuberculosis Mycobacterial Infection (Jul 2004 - Sept 2007)

Protocol: NTM
Case Report Form: NTM 

paediatrician experience with management of sudden unexpected death in infancy (SUDI)

** A one off survey of NSW Paediatrician Experience **

Protocol: SUDI

Case Report Form: SUDI Part 1
Case Report Form: SUDI Part 2 (Anonymous)

Pertussis (Jan 2001 - Dec 2001)

Protocol: Pertussis
Case Report Form: Pertussis 

Prader Willi syndrome (Jan 1998 - Dec 2000)

Final Report: PWS
Protocol: PWS
Case Report Form: PWS

Primary Immunodeficiency disease (PID) (Jan 1997 - Dec 1999)

Final Report: PID
Protocol: PID
Case Report Form: PID

RETT SYNDROME (RETT)

Protocol:  Rett
Printable Case Report Form:  Rett 

SEPTO-OPTIC DYSPLASIA

Study Information Sheet: Septo-optic dysplasia

Printable Case Report Form: Septo-optic dysplasia

serious Seat Belt Injuries (SSI) (Jan 2006 - Dec 2007)

Abdominal Injuries Severity Scale
Protocol: SSI
Case Report Form: SSI

Severe Combined Immunodeficiency syndrome (SCID) (May 1995 - Dec 2001)

Protocol: SCIDS
Case Report Form: SCIDS 

Severe Complications of Influenza (Sep 2007 - ongoing)

Study Information Sheet 2023 (May 2023 - September 2023)
Case Report Form 2023 (May 2023 - September 2023)

Study Information Sheet 2022 (June 2022 - September 2022)
Case Report Form 2022 (June 2022 - September 2022) 

Study Information Sheet 2021 (May 2021 - September 2021)
Case Report Form 2021 (May 2021 - September 2021)

Protocol and Case Report Form 2020 (May 2020 - September 2020)

Protocol and Case Report Form 2019 (June 2019 - September 2019)

Protocol and Case Report Form 2018 (June 2018 - September 2018)

Protocol and Case Report Form 2017 (June 2017 - September 2017)

Protocol and Case Report Form 2016 (June 2016 - September 2016)

Protocol and Case Report Form 2015 (July 2015 - September 2015)

Protocol and Case Report Form 2014 (July 2014 - September 2014)

Protocol and Case Report Form 2013 (July 2013 - September 2013)

Protocol and Case Report Form 2012 (July 2012 - September 2012)

Protocol and Case Report Form 2011 (June 2011 - September 2011)

Protocol and Case Report Form 2010 (July 2010 - October 2010)

Protocol and Case Report Form 2009 (May 2009 - September 2009)

Protocol and Case Report Form 2008 (July 2008 - September 2008)

Protocol and Case Report Form 2007 (September 2007)

SEVERE INDOOR TRAMPOLINE PARK INJURY (SITPI)

Study Information Sheet:  Severe Indoor Trampoline Park Injury
Case Report Form:  Severe Indoor Trampoline Park Injury 

SEVERE NEONATAL HYPERBILIRUBINAEMIA OR EXCHANGE TRANSFUSION (SEVERE JAUNDICE - SNH) (APR 2010 - MAR 2013)

Protocol: SNH
Case Report Form: SNH
Public Information Sheet SNH 

Simple Vitamin D Deficiency rickets (VitD) (Jan 2006 - Aug 2007)

Protocol: VitD
Case Report Form: VitD 

STROKE IN CHILDREN < 2 YEARS OLD

Protocol: Stroke in Children < 2 years old
Case Report Form: Stroke in Chidren < 2 years old

Subacute sclerosing panencephalitis (SSPE) (JAN 1995 - DEC 1998)

Final Report: SSPE
Protocol: SSPE
Case Report Form: SSPE 

SUBDURAL HAEMATOMA AND EFFUSION IN CHILDREN < 2YRS (SDH) (JUL 2010 - DEC 2012)

Protocol: SDH
Case Report Form: SDH
Case Report Form: Follow Up 12 Months 

SUDDEN UNEXPECTED EARLY NEONATAL DEATH OR COLLAPSE (SUEND) (JAN 2012 - DEC 2014)

Protocol: SUEND
Case Report Form: SUEND

Systemic lupus erythematosus (SLE) (OCT 2009 - DEC 2011)

Protocol: SLE
Case Report Form: SLE
Case Report Form: 12 Month Follow-up SLE
Public Information Sheet SLE

VARICELLA COMPLICATIONS REQUIRING HOSPITALIZATION (May 06 - Dec 13)

Protocol: Varicella Complications 2006-2013
Case Report Form: Varicella Complications 2006-2013

VITAMIN K DEFICIENCY BLEEDING (HDN) (mAY 1993 - DEC 2017)

Protocol: Vitamin K Deficiency Bleeding
Case Report Form: Vitamin K Deficiency Bleeding

X-LINKED HYPOPHOSPHATAEMIC RICKETS (XLH) PREVALENCE STUDY (June 2020)

** A one off survey **

Protocol: X-Linked Hypophosphataemic Rickets (XLH) Prevalence
Case Report Form: X-Linked Hypophosphataemic Rickets (XLH) Prevalence