Members of the Society of Genealogists have been helping London’s Moorfields Eye Hospital and UCL Institute of Ophthalmology with a genetic genealogy research project which aims at studying more than 80 families from the UK with a particular form of glaucoma called primary angle-closure glaucoma (PACG).
Having discovered how much is involved in compiling family trees Moorfields approached the Society of Genealogists for help in undertaking genealogical research, on the advice of one of its patients who had worked for the SoG some time ago and who is now coincidentally part of the clinical study into this condition.
The genealogists’ task was to identify other members of families who might be related to sufferers, firstly to enable further study into the idea that this form of the disease is genetically related and then to identify distant family members who might well be treatable. Having compiled an extended family history the medical teams can make contact with the more distant family members through existing patients. The project will be completed in early 2010 and has already shown that one in five first degree relatives of patients with PACG may also be at risk.
21 family historians volunteered from the Society of Genealogists, under the direction of the genealogy project leaders, Dr Geoff Swinfield and Diana Bouglas. Beginning in Summer 2008, extensive genealogical research has been needed to identify, expand and link together a number of extended family trees. The project has benefited from the volunteers’ genealogical skills and expertise as well as their extensive knowledge of family history sources both online and in record offices that can be used to compile family trees.
A highlight of the project was a special event at UCL in September called Glaucoma, Genes and Me which brought together the families who are currently taking part in the research with the medical teams who have been treating them and the genealogists who had helped trace the family trees. About 140 people took part in the event and it is thought to be the first such event of its kind in this field. Approximately half of the participants were patients, the rest were family members along with 8 of the genealogists who had helped in the project. One of the key objectives of the event was to discover, through group discussions, the areas of most importance to PACG patients and their families. This will enable future research to focus on those areas and improve patient care. The day included various presentations made by the medical team and the major charities which support people with Glaucoma along with the patients who are taking part in the study. The project and the event are sponsored by The Richard Desmond Charitable Trust via a grant from Fight for Sight, as well as the International Glaucoma Association.
Dr Geoff Swinfield rounded off the day with a presentation about the techniques and sources used by genealogists to compile family trees and trace living relatives. Many of the families who attended were fascinated by their family trees. Some were introduced to relatives they had never met before. Others brought along their own family history research and wanted help and guidance to take it further with which of course the Society of Genealogists is delighted to help.