What is a CP Register?
A CP Register is confidential research database of clinical information about people with cerebral palsy. The kind of information collected for a CP Register ranges from one register to another, but generally includes items such as: birth details (eg. hospital, birth weight, weeks gestation) and clinical details (e.g. type of CP, severity of CP, birth defects and syndromes, associated impairments, timing and cause of CP if known).
Why are CP Registers Important?
The information families share with us when they join the register assists researchers in understanding:
- Causes of cerebral palsy: By identifying causes of cerebral palsy, we can potentially prevent some cases
- Interventions: By looking at long term outcomes, we can help understand the outcomes of different interventions for people with cerebral palsy
- Services: By monitoring trends we can help service providers plan and organise their services to better meet the needs of people with cerebral palsy.
People who belong to CP Registers may at times be invited to participate in studies into new treatments for cerebral palsy.
How Do I Join a CP Register?
Joining a CP Register is easy. Just contact your state or national register - details below.
Australia
-
- Australian and NSW Cerebral Palsy Registers
- Cerebral Palsy Alliance
- University of Notre Dame
- PO Box 560, Darlinghurst NSW 1300 Australia
- cpregister@cerebralpalsy.org.au
- Phone
- 02 8204 4492 (+61 2 8204 4492)
- Website
- https://secure.cpregister-aus.com.au
-
- Northern Territory Cerebral Palsy Register
- c/- Physiotherapy Department, Royal Darwin Hospital
- PO Box 41326, Casuarina, Northern Territory 0811, Australia
- carmen.ewens@nt.gov.au
- Phone
- 08 8922 8338 (+61) 8 8922 8338
-
- Queensland Cerebral Palsy Register
- PO Box 386, Fortitude Valley, Brisbane, Qld 4006, Australia
- mdelacy@cplqld.org.au
- Phone
- 07 3358 8002 (+61 7 3358 8002)
-
- South Australia Cerebral Palsy Register
- Children's Youth and Women's Health Service
- Level 8 Rieger Building, 72 King William Road, North Adelaide, South Australia 5006, Australia
- cpregister@mail.wch.sa.gov.au
- Phone
- 08 816 17368 (+61 8 8161 7368)
- Fax
- 08 8161 6088 (+61 8 8161 6088)
-
- Tasmanian Cerebral Palsy Register
- Menzies Research Institute
- Private Bag 23, Hobart, Tasmania 7001, Australia
-
- Victorian Cerebral Palsy Register
- Department of Developmental Medicine, Royal Children's Hospital
- Flemington Road, Parkville, Victoria 3052, Australia
- vic.cpregister@rch.org.au
- Phone
- 03 9345 4808 (+61 3 9345 4808)
- Fax
- 03 9345 5871 (+61 3 9345 5871)
-
- Western Australia Cerebral Palsy Register
- Telethon Institute for Child Health Research
- 100 Roberts Road, Subiaco, Western Australia 6008, Australia
- linda@ichr.uwa.edu.au
- Phone
- 08 9489 7766 (+61 8 9489 7766)
- Fax
- 08 9489 7700 (+61 8 9489 7700)
Europe
-
- Denmark - National Danish Cerebral Palsy Register
- Rigshospitalet Ped Clinic
- 5004 Blegdamsvej, Copenhagen, 2100, Denmark
- Phone
- +45 35 45 5096
-
- France - Institut National de la Santé et de la Recherche Médicale (INSERM)
- INSERM U 558
- 37 Allées Jules Guesde,Toulouse, 31073, France
- carnaud@cict.fr
- Phone
- +05 67 77 12 86
-
- France - RHEOP
- 23, av Albert 1er de Belgique Grenoble, Isère, 38000, France
- syrey.rheop@orange.fr
- Phone
- +0033 45 758 2657
-
- Italy - Policlinico Gemelli di Roma
- Largo Agostino Gemelli 1, Rome, Italy, 00100
- mgtorrioli@rm.unicatt.it
- Phone
- +0039 336 65 4363
-
- Lithuania - Cerebral Palsy Register
- Kaunas Child Development Clinic
- Lopselio st. 10, Kaunas, 47180, Lithuania
- prasauskiene.a@takas.lt
- Phone
- +370 698 40936
-
- Norway - Cerebral Palsy Register
- Habiliteringssenteret
- Postbox 2168, Welhavensvei 14-16, Tønsberg, 3103, Norway
- Phone
- guro.andersen@siv.no
-
- Slovenia - Cerebral Palsy Register
- University Medical Centre Ljubljana Vrazov trg 1, Ljubljana, SI-1525, Slovenia
- milivoj.velickovic@mf.uni-lj.si
- Phone
- +386 1 5229200
-
- Southern Ireland Cerebral Palsy Register
- Enable Ireland
- Ballintemple, Cork, Ireland
- alyons@enableireland.ie
- Phone
- +00353 (0)21 461 6854
-
- Spain - Servicio Madrileño de Salud (SERMAS)
- Hospital Universitario 12 de Octubre Unidad de Investigación – Ed. Materno- Infantil (P-2) Madrid, Madrid, 28041, Spain
- jdlcruz@h12o.es
- Phone
- +34 913 808 672
-
- Sweden - Lund University Hospital
- Children´s Hospital Lund University Hospital
- LUND, SE-221 85, Sweden
- lena.westbom@med.lu.se
- Phone
- +46 46 178268 or 171000
-
- Sweden - The Queen Silvia Children's Hospital
- The Regional Rehabilitation Center for Children and Adolescents The Queen Silvia Children's Hospital
- Box 210 62, Göteborg, SE 418 04, Sweden
- kate.himmelmann@vgregion.se
- Phone
- +46 31 502 623
United Kingdom of Great Britain and Northern Ireland
-
- England - 4Child
- University of Oxford
- 4Child - Four Counties Database of Cerebral Palsy, Vision Loss and Hearing Loss in Children, National Perinatal Epidemiology Unit, University of Oxford, Old Road Campus, Headington, Oxford OX3 7LF England
- geraldine.surman@npeu.ox.ac.uk
- Phone
- +44 (0) 1865 289724
-
- England - North of England Collaborative Cerebral Palsy Survey
- University of Newcastle upon Tyne
- Sir James Spence Institute, Royal Victoria Infirmary, Queen Victoria Road, Newcastle NE1 4L, England
- allan.colver@ncl.ac.uk
- Phone
- +44 (0) 191 219 6672
-
- England - The Mersey Region Register
- University of Liverpool
- Division of Public Health, School of Population, Community & Behavioural Sciences, University of Liverpool, Whelan Building, Quadrangle, Liverpool L69 3BX, England
- Phone
- +44 151 794 5580
-
- Northern Ireland Cerebral Palsy Register
- Queen's University Belfast
- Room 1.36, Mulhouse Building ICS, Grosvenor Road, Belfast, BT12 6BJ, Northern Ireland
- j.parkes@qub.ac.uk
- Phone
- +028 9063 5045
-
- Scotland - Cerebral Palsy Register for Scotland
- Napier University
- Edinburgh EH10 5DT, Scotland
- cprs@napier.ac.uk
- Phone
- +0131 455 2454
United States of America
-
- USA - Atlanta - Metropolitan Atlanta Developmental Disabilities Surveillance Program
- Centers for Disease Control and Prevention
- 1600 Clifton Road, MS E-86, Atlanta, GA, 30333, USA
- mxy1@cdc.gov
- Mobile
- +404 498 3842
- Website
- http://www.cdc.gov/ncbddd/dd/maddsp.htm
-
- USA - Chicago - Cerebral Palsy Research Registry
- Northwestern University
- 645 North Michigan Avenue, Suite 1100, Chicago, Illinois, 60611, USA
- d-hurley@northwestern.edu
- Phone
- +1 312 503 3342
- Fax
- +1 312 908 0741
- Website
- https://www.cpregistry.org
