Isle of Man Data Governance Committee

The Isle of Man Data Governance Committee was set up to:

Ensure secure storage and responsible management of the Isle of Man Birth Cohort data and biological samples.
Ensure the study is not brought into disrepute and that participant confidentiality is respected.
Evaluate and approve requests for access to the Isle of Man Birth Cohort data and biological samples.
Review for accuracy and to ensure no breaches in confidentiality in all papers before submission for publication that have utilised the Isle of Man data.

Committee members

Miss Cathy Williams (Chair from March 2018)

Cathy Williams is a Paediatric Ophthalmologist working in Bristol with a longstanding interest in children’s visual development. She trained at St Thomas’s Hospital in London and after early medical and surgical jobs in and around London, came to Bristol Eye Hospital in 1989. She then spent the next 10 years completing her surgical training and conducting research - first as part of an MRC-funded PhD fellowship and then as a Regional Research Fellow. The research was based on the ALSPAC study and involved Cathy and a team of colleagues testing the vision of thousands of children, to find out whether early screening for vision defects was helpful and more broadly, what were the predictors and associations of visual problems in children.

Cathy was appointed a Consultant Paediatric Ophthalmologist at Bristol Eye Hospital in 2000 and since then has continued to combine research and clinical practice. She is currently an NIHR Senior Research Fellow investigating the prevalence, impact and best ways to support children with brain-related vision problems, as well as continuing with projects using ALSPAC vision. She lives in Bristol with her husband, two teenaged children and two cats.

Professor Jean Golding

Graduated from Oxford in 1961. A career break for child care was followed by employment 1966–8 by the team analysing data from the 1958 British National Birth Survey followed by a research fellowship at the Galton Laboratory, Department of Human Genetics and Biometry to continue the analysis (1968–1971). Employment at Oxford University in Richard Doll’s department and then the National Perinatal Epidemiology Unit was followed by a move to the University of Bristol in 1980, to the Department of Child Health where she worked on the 1970 British Birth Cohort. She founded the international journal Paediatric and Perinatal Epidemiology in 1987 and continued as its editor-in -chief until 2012. She assisted in the design and analysis of birth surveys in Greece (1983) and Jamaica (1986), before creating the design and development of the ELSPAC and ALSPAC pre-birth cohorts; she continued as scientific and executive director of ALSPAC until the end of 2005. She is now Emeritus Professor of Paediatric and Perinatal Epidemiology at the University of Bristol where she is still research-active. She was awarded an OBE for services to medical science in the New Year’s honours list of 2012 and two honorary degrees (from Bristol and UCL) for her contribution to longitudinal cohort studies. Jean has two grown-up children and a grandson.

Dr Susan M Ring

Co-Director of ALSPAC/Head of Laboratory. Graduated from Sheffield in 1988. Sue has considerable experience in managing sample banks and has overseen provision of samples to a number of high profile genetic epidemiological studies including the Wellcome Trust Case Control Consortium. Her expertise includes the development of methods related to the production of lymphoblastoid cell lines and biobanking methods. Sue established and now manages DNA, lymphoblastoid cell line and biosample resources for the ALSPAC and 1958 British birth cohort studies. She manages aspects of biobanks for several cohort studies including: ALSPAC; the 1958 birth cohort; 1946 birth cohort; Head and Neck 5000 and the Cleft Collective; the Millenium Cohort; Born in Bradford and Twins UK. Sue has two daughters.

Ms Karen Birmingham

A former nurse/mental health nurse. Karen worked on ELSPAC/ALSPAC since 1988 and until recently was Research Ethics Manager for ALSPAC. She has recently been appointed as a Research Fellow working on the archiving of ELSPAC and obtaining oral histories from key individuals from the early days of the studies. Karen has started work on obtaining validation interviews on ALSPAC participants in regard to transgenerational effects of stress and smoking (with Jean and Yaz). Karen has a daughter and a young grandson and will be leaving the committee at the end of 2021.

‌Mr Steven Gregory

Data Manager for the Isle of Man study. Steve has gained extensive experience in cleaning, editing and analysing large data sets within ALSPAC. Much of his work involves creating data files in preparation for statistical analyses by senior academics and research collaborators. He has undertaken checking and correcting on 50 sets of Isle of Man data, the largest having over 1000 variables, with a combined total of several million individual values. Steve has two young sons.

Mrs Yasmin Iles-Caven

Degree in Management Studies and is Secretary to the Committee. Yaz has been involved in ELSPAC since its inception mainly in managerial roles and has worked with Jean Golding since 1981. From 2011-2016, she undertook the cataloguing and archiving of the ELSPAC/ALSPAC administrative documentation from the mid-1980s to 2006, when Jean retired. She is currently a research associate at Bristol undertaking research with Jean and her team on several projects: effects of maternal mercury on the offspring; “locus of control”; and transgenerational effects of smoking and stress on the offspring. Yaz has a teenage daughter.

Mrs Barbara Corlett

ELSPAC in the Isle of Man parent. Barbara joins the Committee either in person or via teleconferencing.