Protocol for stage 1 of the GaP study (Genetic testing acceptability for Paget's disease of bone): an interview study about genetic testing and preventive treatment
2006

Acceptability of Genetic Testing for Paget's Disease

Sample size: 20 publication Evidence: moderate

Author Information

Author(s): Anne L Langston, Marie Johnston, Clare Robertson, Marion K Campbell, Vikki A Entwistle, Theresa M Marteau, Marilyn McCallum, Stuart H Ralston

Primary Institution: Health Services Research Unit, University of Aberdeen

Hypothesis

Would relatives of people with Paget's disease want testing and treatment if they were available?

Conclusion

The study aims to understand factors influencing the acceptability of genetic testing and preventative treatment for Paget's disease among relatives.

Supporting Evidence

  • Paget's disease affects about 3% of individuals over the age of 55 years in the UK.
  • Genetic factors play a significant role in Paget's disease.
  • Effective treatments exist that could prevent or delay the onset of Paget's disease.

Takeaway

This study is trying to find out if family members of people with Paget's disease would be interested in genetic testing and treatment to prevent the disease.

Methodology

Semi-structured interviews with individuals suffering from Paget's disease and their relatives.

Potential Biases

Potential biases in self-reported beliefs and perceptions about genetic testing and treatment.

Limitations

The study may not include non-English speakers and those with limited life expectancy.

Participant Demographics

Participants include individuals with Paget's disease and their first and second-degree relatives.

Digital Object Identifier (DOI)

10.1186/1472-6963-6-71

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