51cg

Biography

Karen joined the Epidemiology Group as a Study Co-ordinator in November 2015. She graduated in Sociology from the 51cg in 1997 and gained an MLitt in Sociology in 2002. From 1999 to 2004 Karen worked on two Wellcome Trust studies funded by their Programme in Biomedical Ethics. In 2004 Karen moved to the voluntary sector to work for the Scottish Huntington's Association, managing a National Youth Service for young people at risk of Huntington's disease, whilst writing up her PhD. She rejoined the University in 2010 as a Research Fellow in Medical Genetics. In November 2010 she was awarded a Postdoctoral Fellowship from the Chief Scientist Office in Health Services and Health of the Public Research, working between the Health Services Research Unit and Medical Genetics Group from November 2010-September 2016. From November 2015-March 2017 she also co-ordinated two MRI studies exploring fatigue in Lupus disease and whether NSAIDs mask inflammation on MRI in Axial Spondyloarthritis, before embarking in her current role as Study Co-ordinator of the new BSR-PsA register.

Wellcome funded studies

Karen's first Wellcome Trust funded study ‘To tell or not to tell’ explored how families communicate about genetic risk of two adult-onset conditions: Huntington’s disease and Hereditary Breast/Ovarian Cancer (see ). Throughout the course of this study Karen became particularly interested in the experiences of young people growing up at risk of Huntington’s disease (HD) and their role as carers for affected parents. This led to the award of a second Wellcome Trust grant ‘The Genome Generation’ which aimed to explore how young people experience growing up in a family affected by HD, an often stigmatised and isolating condition where parents can have great difficulty telling their children about the disease and its hereditary nature.

Scottish Huntington’s Association

Following on from this study Karen moved to the voluntary sector to work for the Scottish Huntington's Association, where she and the team developed a pilot project into a National Youth Service for young people at risk of HD, now a world leading service for children and young people who have a diagnosis of HD in their family (see ). Whilst undertaking her post as Youth Service Manager Karen also completed her PhD in Public Health. 

Medical Genetics and HSRU

After a year of maternity leave in 2008-2009 Karen rejoined the University in 2010 as a Research Fellow in Medical Genetics, where she co-wrote a paper about partner’s experiences of Huntington’s disease and continued to develop her programme of work.

In November 2010 Karen was awarded a prestigious Postdoctoral Research Training Fellowship from the Chief Scientist Office, Scottish Executive Health Department (at 70% FTE). The overall aim was to generate evidence, and develop resources, to help parents and professionals share information with young people about serious adult-onset genetic conditions. The project comprised four linked phases of research: in-depth interviews with genetics professionals; clinic observations of practitioner interactions with parents and young people; prospective and retrospective interviews with patients; and collaborations with patient groups to develop evidence based materials for children and young people. Two adult-onset inherited disorders were used as exemplars: Huntington's disease and Familial Hypercholesterolaemia (FH). In addition, the project benefitted from a multidisciplinary advisory group of academics, clinicians and practitioners working in the field, as well as parents and young people. 

Overall, Karen’s fellowship has given her the opportunity to develop a broad range of generic research management skills, whilst retaining a particular interest in family communication about genetics and patient experiences of predictive genetic testing.

Epidemiology Group

In November 2015 Karen joined the Epidemiology Group as Study Co-ordinator on a Lupus UK funded project exploring the aetiology of fatigue in Systemic Lupus Erythematosus (SLE). Whilst Karen’s work had primarily focussed upon the social, ethical and public health aspects of predictive genetic medicine this exciting new role gave her the opportunity to develop her experience of study management within the University and further her interest in the epidemiology of specific conditions such as SLE, Axial Spondyloarthritis and Psoriatic Arthritis. In September 2016 Karen moved on to co-ordinate another MRI study, this time funded by Arthritis Research UK, entitled: Do non-steroidal anti-inflammatory drugs (NSAIDs) reduce the appearance of sacroiliac joint bone marrow oedema on MRI, in spondyloarthritis? For more information please see the study website:   In April 2018 Karen moved to another project within the group, a register study run by the 51cg on behalf of the  British Society for Rheumatology (BSR), which aims to explore the long term implications of Psoriatic Arthritis. For more information please visit: 

Research Overview

Qualitative methodology

Family communication about genetics

Young people at risk of adult-onset inherited conditions

Young carers

Huntington's disease

Familial Hypercholesterolaemia

Hereditary Breast/Ovarian Cancer

Registry Studies

Current Research

Karen continues to have a long-term interest in family communication about genetics and predictive genetic testing as well as methods for undertaking qualitative research and registry studies.

Knowledge Exchange

Part of PPI Coordinating team, Epidemiology Group since 2021. PPI Team awarded Principal's Excellence Award for Public, Patient and Community Involvement and Engagement, April 2026.

Collaborations

Karen was a member of the European Huntington's Disease Network's Genetic Testing and Counselling Working Groups (see ).

Karen has advised HEART-UK on the development of their work with children and young people.

Karen was previously a board member of the young people’s charity HDYO -Huntington’s Disease Youth Organisation - from 2012-2017 (see http://en.hdyo.org/eve/about/26).

Funding and Grants

November 2010-November 2014 CSO Postdoctoral Training Fellowship in Health Services and Health of the Public Research. ‘Sharing information with children and young people about genetic risk: Using evidence to develop services for parents and practitioners’ £153,105

2002-2004 Wellcome Trust Programme in Biomedical Ethics Grant. Simpson SA, Forrest Keenan K, Miedzybrodzka Z, van Teijlingen E, McKee L. 'Growing up at-risk of late-onset familial disease' £81,876

Teaching Responsibilities

In previous years Karen has taught on the qualitative component of the Introduction to Research Methods module (HE3010) for third year Health Science students.