This research deployed a variety of methods, including open-ended, semi-structured interviews with Huntington's affected individuals (from twenty-four families); more structured conversational enquiries with members of relevant user groups and health professionals; the collection of medical genealogies for most families together with other primary data; and participant observation. Each of these is discussed below.

In-depth and semi-structured home-based interviews were conducted with families from different parts of the UK (North, Midlands, South, Scotland, Wales and Northern Ireland). Adult interviewees were typically white Caucasian, heterosexual, middle class, Christian (Protestant). Research participants were interviewed individually, and where appropriate, as part of a family group or as a couple. One important aim of the study was to include as many consenting members of each contacted family as possible, including wherever possible data collection across the generations. In some cases, it was possible to record up to four generations within a given family. As a result those persons directly affected by the disease, as well as potential, current or ex-carers became the focus of the research. The average length of the interviews was between 3–5 hours. The interviews were usually tape-recorded sessions and were transcribed for further analysis.

Great care has been taken during the course of this study to ensure ethical practice, informed consent and confidentiality for the research. Confidentiality has been respected at all times during this project and will continue to be respected given the potentially discriminating effects of genetic information.