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RESOURCES AVAILABLE FOR CHILDHOOD EPIDEMIOLOGY RESEARCH
Northern Region Young Persons' Malignant Disease Registry (NRYPMDR)
The Northern Region Young Person’s
Malignant Disease Registry (NRYPMDR) has registered malignancies among patients
diagnosed under 15 years while resident in the area of
the Northern Regional Health Authority, excluding
* Craft AW, Amineddine HA, Scott JE, Wagget J. The Northern region Children's malignant disease registry 1968-82: incidence and survival. British Journal of Cancer 1987; 56(6): 853-8
* Cotterill SJ, Parker L, Malcolm AJ, Reid M, More L, Craft AW. Incidence and survival for cancer in children and young adults in the North of England, 1968-1995: a report from the Northern Region Young Persons' Malignant Disease Registry. British Journal of Cancer 2000; 83(3): 397-403
* Pearce MS, Cotterill SJ, Parker L. Fathers' occupational contacts and risk of childhood leukaemia and non-Hodgkin lymphoma. Epidemiology 2004; 15(3): 352-6
* Pearce MS, Parker L, Cotterill SJ, Gordon PM, Craft AW. Skin cancer in children and young adults: 28 years' experience from the Northern Region Young Person's Malignant Disease Registry, UK. Melanoma Research 2003; 13(4): 421-6
* Neuroblastoma: changing incidence and survival in young people aged 0-24 years. A report from the North of England Young Persons' Malignant Disease Registry. Medical Pediatric Oncology 2001; 36(1): 231-4
Yorkshire Specialist Register of Cancer in Children & Young People (YSRCCYP)
The Yorkshire Specialist Register of Cancer in Children & Young Adults (YSRCCYA) collects details of all children and young people who are under the age of 30 and are resident in the area of Yorkshire Regional Health Authority when diagnosed with a malignancy or a benign brain tumour or other specified condition since 1974. For further details, see the YSRCCYP Procedures Manual. 1991 census population approximately 700,000 under 15 years.
* McKinney PA, Parslow RC, Lane SA, Bailey CC, Lewis I, Picton S, Cartwright RA. Epidemiology of childhood brain tumours in Yorkshire, UK, 1974-95: geographical distribution and changing patterns of occurrence. British Journal of Cancer 1998; 78(7): 974-9
* Feltbower RG, Pearce MS, Dickinson HO,
* Feltbower RG, Picton
S, Bridges LR, Crooks DA, Glaser AW, McKinney PA. Epidemiology
of central nervous system tumours in children and young adults (0-29 years),
* Feltbower RG, McKinney PA, Greaves MF, Parslow RC, Bodansky HJ. International parallels in leukaemia and diabetes epidemiology. Archives of Diseases in Childhood 2004; 89(1): 54-6
* McKinney PA, Feltbower RG, Parslow RC, Lewis IJ, Glaser AW, Kinsey SE. Patterns of childhood cancer by ethnic group in Bradford, UK 1974-1997. European Journal of Cancer 2003; 39(1): 92-7
* Feltbower RG, Moorman AV, Dovey G,
Kinsey SE, McKinney PA. Incidence of childhood acute lymphoblastic
* Wilkinson JR, Feltbower RG, Lewis IJ, Parslow
RC, McKinney PA. Survival from adolescent cancer in
* McKinney PA, Feltbower RG, Parslow
RC, Lewis IJ, Picton S, Kinsey SE, Bailey CC.
Survival from childhood cancer in Yorkshire, U.K.: effect of ethnicity and
European Journal of Cancer 1999; 35(13): 1816-23
Northern & Yorkshire Cancer Registry and Information Service (NYCRIS)
The cancer registry for the North East is the Northern & Yorkshire Cancer Registry and Information Service (NYCRIS), which is based in Leeds. NYCRIS was created from a merger of the former cancer registries for the Yorkshire and the Northern Regions in 1994. There is a very positive relationship between NYCRIS and the North East Public Health Observatory (NEPHO).
North Cumbria Community Genetics Project (NCCGP)
The North Cumbria Community Genetics Project (NCCGP) is a collaborative project between Newcastle University (School of Clinical Medical Sciences (Child Health), the Institute of Human Genetics) and Westlakes Research Institute in Cumbria. The NCCGP is a large tissue and DNA collection which has obtained samples from over 85% of consecutive pregnancies at the West Cumberland Infirmary, Whitehaven, between 1996 and 2003. Following informed consent during routine antenatal care, a self-completed questionnaire was returned by participating expectant mothers and included information on demographic characteristics, cigarette smoking and indices of socio-economic status. Infant medical records were reviewed to obtain information on birth outcomes (gender, gestational age and birth weight). DNA was extracted from maternal venous blood and infant cord blood. The NCCGP therefore represents an ethnically homogeneous cohort of both maternal and offspring samples and as such is an excellent resource for genetic epidemiologic investigation. To date the NCCGP has been utilised for a number of genetic epidemiologic investigations. Each research study using NCCGP samples requires ethical approval from the North Cumbria LREC. DNA has been collected from 7000 newborns and 3000 mothers. 2700 of these are mother-child pairs with available DNA, of which all 2500 are singleton deliveries. (A Poster presentation about NCCGP; PEALS and NCCGP)
* Chase DS, Tawn EJ, Parker L, Jonas P, Parker CO, Burn J. The
* Healey CS, Dunning AM, Teare MD, Chase DS, Parker L, Burn J, Chang-Claude J, Mannermaa A, Kataja V, Huntsman DG, Pharoah PD, Luben RN, Easton DF, Ponder BA. A common variant in BRCA2 is associated with both breast cancer risk and prenatal viability. Nature Genetics. 2000; 26: 362-4.
* Relton CL, Daniel CP, Fisher A, Chase DS, Burn J, Tawn EJ. Polymorphisms of the DNA repair gene XRCC1 and the frequency of somatic mutations at the glycophorin A locus in newborns. Mutation Research. 2002; 502: 61-8.
* Relton CL, Daniel CP, Hammal DM, Parker L, Janet Tawn E, Burn J. DNA repair gene polymorphisms, pre-natal factors and the frequency of somatic mutations in the glycophorin-A gene among healthy newborns. Mutation Research. 2004; 545: 49-57.
Cumbrian Births Database
The Cumbrian Births Database (CBD) was originally established within the Department of Child Health at the University of Newcastle upon Tyne to investigate possible trans-generational effects of preconceptional exposures to ionising radiation (Dickinson et al, 1996; Parker et al, 1997; for further details and the geographic area covered, see Dummer et al, 1998). CBD contains birth registration details of all 287,993 births (283,668 live births and 4,325 stillbirths) to mothers living in Cumbria between 1950 and 1993 inclusive. Details of cancers for the cohort, no matter where they were diagnosed throughout the UK, have been obtained from National Health Services Central Register cancer and death registrations, from the two regional cancer registries in the North and North-West of England and from regional and national children’s cancer registries. This database, therefore, provides a truly population-based cancer incidence in singleton and twin births.
All live and stillbirth registrations for the study area were obtained from the Office for National Statistics and entered into a computer database, described in detail elsewhere (Dickinson et al., 1996; Parker et al., 1997 & 1999). Each of the live birth registrations supplied by ONS gave details of the date and place of birth, the name and sex of the child, the name, surname and occupation of the child’s father, the name and maiden name of the child’s mother, and the name and address of the person (informants) registering the birth. Parents’ names were used to identify siblings, and their maternity order was inferred from their date of birth (e.g. if the births within a family were singleton, twin, twin, singleton, then the respective maternity orders for these births would be 1,2,2,3). Multiple births were identified as those children within a family who had dates of birth within one month of each other. This length of time was chosen to identify as many multiple births as possible, including stillbirths. All twin pairs so identified were carefully checked to ensure that they were twins and not, for example, births in separate families. Further checks were also made to ensure none were missed by this process. These included a combination of date of birth, maternal details, child’s forename and district of birth. This process led to the identification of untrue twin pairings, as well as identifying births which had multiple entries on the CBD, either due to them being entered twice in error, or because the birth had been reregistered and ONS had forwarded both registrations. All such problems identified on the CBD were corrected prior to the final analyses of this investigation.
* Parker L, Smith J, Dickinson H et al. The creation of a database of children of workers at a nuclear facility: an exercise in record linkage. Applied Occupational and Environmental Hygiene. 1997; -45.
* Dummer TJ, Dickinson HO, Pearce MS, et al. Stillbirth risk with social class and deprivation: no evidence for increasing inequality. Journal of Clinical Epidemiology. 2000; 53: 147-55
* Dummer TJ, Dickinson HO, Parker L. Adverse pregnancy
outcomes around incinerators and crematoriums in
* Dummer TJ, Dickinson HO, Pearce MS, et al. Stillbirth rates
around the nuclear installation at Sellafield
* Dickinson HO, Parker L, Binks K, Wakeford R, Smith J. The sex ratio of children in relation to paternal preconceptional radiation dose: a study in Cumbria, northern England. Journal of Epidemiology and Community Health 1996; 50: 645-52.
* Linkage reference:
Dickinson HO, Salotti JA, Birch PJ, Reid MM, Malcolm A, Parker L. How complete and accurate are cancer registrations notified by the National Health Service Central Register for England and Wales? Journal of Epidemiology and Community Health 2001; 55: 414-22.
Regional Maternity Surveys Office (RMSO) Datasets
The Northern Regional Perinatal Mortality Survey (PMS) was established in 1981 with the aim of studying perinatal mortality and its causes. From 1985, the Fetal Abnormality Survey (now Northern Congenital Anomaly Survey - NorCAS) was added and from 1993 the regional co-ordination for the Confidential Enquiry into Stillbirths and Deaths in Infancy (now Confidential Enquiry into Maternal and Child Health - CEMACH). It now also houses registers for multiple pregnancy, maternal morbidity, diabetic pregnancy and cerebral palsy (NECCPS). The RMSO formally became part of the North East Public Health Observatory (NEPHO) in 2003, having previously part of the University of Newcastle. Researchers working with this information are from a number of academic and NHS bodies, mainly linked with Newcastle University.
* Northern Regional Health Authority Coordinating Group. Perinatal mortality: a continuing collaborative regional survey. British Medical Journal 1984; 288: 1717-20
* Northern Regional Survey Steering Group. Fetal abnormality: an audit of its recognition and management. Archives of Diseases in Childhood. 1992; 67: 770-4
* Hawthorne G, Robson S, Ryall EA, Sen D, Roberts SH, Ward Platt MP on behalf of the Northern Diabetic Pregnancy Audit. Prospective population based survey of outcome of pregnancy in diabetic women: results of the Northern Diabetic Pregnancy Audit, 1994. British Medical Journal. 1997; 315(7103): 279-81
* Glinianaia SV,
Rankin J, Wright C, Sturgiss SN, Renwick
M; Northern Region Perinatal Mortality Survey Steering Group. A multiple
pregnancy register in the north of
* Rankin J, Pearce MS, Bell R, Glinianaia SV, Parker
L. Perinatal mortality rates: adjusting for risk factor profile is essential.
Epidemiology. 2005; 19(1):
UK Children's Cancer Study Group (UKCCSG)
UKCCSG Guide to Biological Studies
UK Children's Cancer Case-Control Study
Described in detail:
British Journal of Cancer. 2000; 82(5): 1073-102
National Registry of Childhood Tumours (NRCT)
The National Registry of Childhood Tumours contains population-based data on childhood cancers diagnosed throughout Great Britain from 1962 onwards. The best centralised source of data on childhood cancer in Britain. As of October 2002, it contained 63846 cases. This registry is maintained by Childhood Cancer Research Group (CCRG) in Oxford (Data Collection Questionnaire).
The NRCT is the register of all cases of malignant disease occurring before age 15 years in children resident in England, Scotland and Wales. Follow-up data include records of multiple primary tumours and deaths. Birth records are included for a large proportion of the registrations.
Much of the Group's work is carried out in collaboration with clinicians, particularly members of the U.K. Children's Cancer Study Group, and with other epidemiologists. In addition, the NRCT is used as a basis for studies carried out by other research workers.
* Stiller CA, Allen MB, Eatock EM. Childhood cancer in Britain: the National Registry of Childhood Tumours and incidence rates 1978-1987. European Journal of Cancer 1995; 31A(12): 2028-34.
National Health Service Central Register (NHSCR)
Health Service Central Register (NHSCR) is conducted in order to maintain a
central record of all patients registered in England and Wales for NHS purposes
and to ensure that medical records are passed between Health Authorities
effectively and General Practitioners are paid correctly.
Information is passed to the NHSCR electronically from Health Authorities who are given information via the General Practitioner. Health authorities advise when patients register with General Practitioners in their area. The local registration service advises NHSCR on a weekly basis of all births and deaths registered in England and Wales in order that the central register is updated.
Main topics covered: name and surname, date of birth, sex and the health authority to which a person is registered, is held with previous values of these factors i.e., previous health authority or name. Medical information is not held on the NHSCR. Data have been collected since 29 September 1939.
LSHTM Directory of Clinical Databases
PLERG PEG NYCRIS NICR NECCR UKCCSG