2014 marked the end of one era in the Isle of Man study and the beginning of another. The management team of Stephanie Goodfellow and Edna "Neddy" Rolfe have retired and the responsibility for looking after the valuable data provided by the study families has now passed elsewhere.

When Dr. Goodfellow retired, there was anxiety over what would happen to all the data and samples so carefully collected and stored over the years.

The future

ELSPAC (of which the Isle of Man study is a part) was a European-wide research initiative that was coordinated by Professor Jean Golding at the University of Bristol. Bristol has kindly offered to store the Isle of Man data and to make it available to bona fide researchers.

Bristol, and particularly its School of Social & Community Medicine, has a strong international track record of maintaining national cohort studies, including the Avon Longitudinal Study of Parents & Children (ALSPAC).

The study data will be held by the Centre for Child & Adolescent Health within the School and managed by the IoM Data Governance Committee.

The response rates have been extremely good, but unfortunately, a lack of core funding has dogged this study much like the Avon study in the early days. This lack of funding has meant that the data, although collected and keyed are not all edited and documented ready for analysis. This, however, can be carried out given appropriate finances.

It is the hope of the Committee that research proposals will be written so other researchers can take full advantage of the wealth of information collected from the study participants.

Much research has already been published on the data and a list of publications can be found on this website.

Profiles of Stephanie and Neddy

Stephanie Goodfellow

Stephanie was born in Manchester, where her father, 4 uncles, her godfather and both grandfathers were doctors. After her father was killed at Dunkirk, she lived in Ireland but was educated at Bedales in Hampshire.

She graduated from St. Andrews University, with an honours degree in cyto-genetics under Professor H.G. Callan in 1963. She then held research posts at Oxford (MRC Population Genetics Research Unit); at Great Ormond Street, London and then at the Royal Victoria Hospital, Bournemouth.

By 1979 she had married, had two children (she now has four grandchildren) and moved to the IoM where she took up a research post at the Isle of Man Postgraduate Medical Centre. Here, supported by the late Dr. Stephen Baker, the Isle of Man Pathologist, and Dr Ralf Bourdillon, Stephanie undertook studies of the incidence of acute appendicitis, ischaemic heart disease, sarcoidosis and inflammatory bowel disease on the Island.

Her close links with an eminent epidemiologist (the late Professor David Barker, CBE) led to an introduction to Jean Golding who was setting up the European Longitudinal Study of Pregnancy and Childhood on behalf of the World Health Organisation. With support from Jean at Bristol, Steve Baker and Neddie, Stephanie initiated and ran “ELSPAC in the Isle of Man”.

Edna Rolfe (1935-2019)

Edna, or Neddy as most of you will have known her, was born in Newcastle upon Tyne. She spent six anxious war years in Birmingham while her father was in the RAF. The family returned to Newcastle, where Neddy struggled to understand the Geordie accent, having a strong Brummie twang herself, and attended Rutherford High School for Girls.

At eighteen, she left school and started nursing at Newcastle General Hospital. Because of her Birmingham connections she went back there to do midwifery parts one and two, which, she said, included a hilarious three winter months in the district on her bicycle, just like "Call the Midwife".

Neddy married a doctor who already had planned to come to Castletown as a GP. As a doctor's wife in the 1950s and 1960s she had various roles: secretary, receptionist, giver of advice, and sometimes nurse, “you name it I did it”.

Neddy went on to undertake cancer relief night nursing, worked in a nursery (growing alstroemerias), and then along came ELSPAC.

Neddie had one son, Pip, who lives in Manchester with Catherine and their daughter, Isabelle.

Neddie sadly passed away on 10th June 2019.