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 


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

Final Report: Arthrogyposis Multiplex Congenita  
Protocol: Arthrogyposis Multiplex Congenita  
Case Report Form: Arthrogyposis 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
Protocol CAHPROT
Questionnaire (Form A)
Questionnaire (Form B)


Congenital and neonatal varicella (Mar 1995 - Dec 1997)

Final Report
Protocol
Questionnaire


CRYOPRYIN ASSOCIATED PERIODIC SYNDROME (CAPS) (JuL 2011)

Protocol
Questionnaire



Drowning and near drowning (May 1993 - Dec 1996)

Final Report
Protocol Drowning
Questionnaire 


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
Questionnaire 


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

Protocol: EOED
Case Report Form: EOED  


Extrahepatic biliary atresia (May 1993 - Dec 1996)

Final Report
Protocol
Questionnaire 


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

Protocol
Questionnaire


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

Protocol
Questionnaire
Parent Information Sheet


Haemoglobinopathies (HAEM) (JAN 2004 - MAR 2006)

Protocol HAEM
Questionnaire 


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

Protocol
Questionnaire HUS 


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

Protocol HCV
Questionnaire HCV 


Hirschprung disease (Jan 1997 - Dec 2000)

Final Report
Protocol
Questionnaire 


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

Protocol HI
Questionnaire HI


Intussusception (IS) (May 2007 - May 2010)

Protocol IS
Questionnaire IS 


Invasive haemophilus influenzae infection (Jan 1998 - Dec 2000)

Final Report
Protocol Hib
Questionnaire 


Kawasaki disease (May 1993 - Jun 1995)

Final Report
Protocol KD
Questionnaire KD 


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

Protocol: Microcephaly
Questionnaire: Microcephaly


Munchausen by proxy syndrome (Jan 2000 - Dec 2003)

Protocol
Questionnaire 


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

Protocol GBS
Questionnaire GBS 


Nephrotic syndrome (Jul 1998 - Jun 2000)

Final Report
Protocol
Questionnaire 


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

Protocol NMD
Questionnaire NMD 


Non Tuberculosis Mycobacterial Infection (Jul 2004 - Sept 2007)

Protocol
Questionnaire NTM 


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

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

Protocol: SUDI

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


Pertussis (Jan 2001 - Dec 2001)

Protocol
Questionnaire 


Prader Willi syndrome (Jan 1998 - Dec 2000)

Final Report
Protocol
Questionnaire 


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

Final Report 
Protocol
Questionnaire 


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

Abdominal Injuries Severity Scale
Protocol SSI
Questionnaire SSI 


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

Protocol SCIDS
Questionnaire 


Severe Complications of Influenza (Sep 2007 - ongoing)

Protocol and Case Report Form 2007 (September 2007)

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

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

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

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

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

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

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

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

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

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

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

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

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


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

Protocol SNH
Questionnaire SNH
SNH Public Information Sheet 


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

Protocol VitD
Questionnaire 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
Protocol
Questionnaire SSPE  


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

Protocol SDH
Quetsionnaire SDH
Questionnaire Follow Up 12 Months 


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

SUEND Protocol
SUEND Case Report Form


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

SLE Protocol
SLE Questionnaire
SLE 12 Month Follow Up
SLE Public Information Sheet


VARICELLA COMPLICATIONS REQUIRING HOSPITALIZATION (May 06 - Dec 13)

Protocol
Questionnaire


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