Faculty Bibliography

BACKGROUND: In developing medical research, particularly in regions where medical research is largely unfamiliar, it is important to understand public perceptions and attitudes towards medical research. In preparation for starting the first cohort study in the United Arab Emirates, the Abu Dhabi Cohort Study (ADCS), we sought to understand how we could improve the quality of the research process for participants and increase public trust and awareness of research. METHODS: We conducted six focus groups (FG), consisting of Emirati men and women aged above 18 years to resemble the target population for the ADCS. Sampling was purposive and convenient. Data collection was an iterative process until saturation was reached with no new themes identified. Text from each FG was analyzed separately by identifying emerging issues and organizing related concepts into categories or themes. A coding tree was developed, consisting of the main concepts, themes, subthemes and corresponding quotes. Both themes and main ideas were identified using inductive analysis. RESULTS: Forty-two participants enrolled at 3 academic centers (New York University Abu Dhabi, UAE University, Zayed University) and the Abu Dhabi blood bank. Focus group participants described lack of awareness of research as a challenge to participation in clinical research studies. Altruism, personal relevance of the research, and the use of role models were commonly identified motivators. Participants were generally satisfied with the informed consent process for the ADCS, but would be disappointed if not provided test results or study outcomes. Fear of a breach in confidentiality was a frequently expressed concern. CONCLUSIONS: Participants join research studies for varied, complex reasons, notably altruism and personal relevance. Based on these insights, we propose specific actions to enhance participant recruitment, retention and satisfaction in the ADCS. We identified opportunities to improve the research experience through improved study materials and communication to participants and the broader community.

BACKGROUND: There is substantial variation in nervous system and intracranial tumour incidence worldwide. UK incidence data have limited utility because they group these diverse tumours together and do not provide data for individual ethnic groups within Blacks and South Asians. Our objective was to determine the incidence of individual tumour types for seven individual ethnic groups. METHODS: We used data from the National Cancer Intelligence Network on tumour site, age, sex and deprivation to identify 42,207 tumour cases. Self-reported ethnicity was obtained from the Hospital Episode Statistics database. We used mid-year population estimates from the Office for National Statistics. We analysed tumours by site using Poisson regression to estimate incidence rate ratios comparing non-White ethnicities to Whites after adjustment for sex, age and deprivation. RESULTS: Our study showed differences in tumour incidence by ethnicity for gliomas, meningiomas, pituitary tumours and cranial and paraspinal nerve tumours. Relative to Whites; South Asians, Blacks and Chinese have a lower incidence of gliomas (p<0.01), with respective incidence rate ratios of 0.68 (confidence interval: 0.60-0.77), 0.62 (0.52-0.73) and 0.58 (0.41-0.83). Blacks have a higher incidence of meningioma (p<0.01) with an incidence rate ratio of 1.29 (1.05-1.59) and there is heterogeneity in meningioma incidence between individual South Asian ethnicities. Blacks have a higher incidence of pituitary tumours relative to Whites (p<0.01) with an incidence rate ratio of 2.95 (2.37-3.67). There is heterogeneity in pituitary tumour incidence between individual South Asian ethnicities. CONCLUSIONS: We present incidence data of individual tumour types for seven ethnic groups. Current understanding of the aetiology of these tumours cannot explain our results. These findings suggest avenues for further work.