The Queensland Familial Melanoma Project: study design and characteristics of participants

Family history of melanoma is associated with an increased risk for the disease. Neither the relative contributions of genetic and shared environmental factors to familial risk nor how genetic susceptibility is mediated are known. The Queensland Familial Melanoma Project was undertaken to investigate (a) the role of genetic susceptibility as indicated by skin type, pigmentation and the prevalence of naevi and (b) exposure to solar ultraviolet radiation, and their interaction in the aetiology of familial melanoma. After obtaining doctor's consent, a brief family history questionnaire was mailed to all Queensland residents with a first primary cutaneous melanoma diagnosed between 1982 and 1990. Detailed information on melanoma history and standard melanoma risk factors was sought from all responding twins and familial cases, from a sample of non-familial cases and from cases' relatives. Medical confirmation was sought for all relatives reported to have had melanoma. The final sample comprises 15,907 persons in the 1,912 families of 2,118 melanoma cases, including 509 families in which there are two or more individuals with confirmed melanoma. Melanoma history and risk factors were obtained for 9,746 relatives, including 94 twins of cases. This is the largest family and twin study of cutaneous melanoma yet conducted in an unselected, geographically-defined population. We describe the design of the study and the characteristics of the total study population.