An Update on the Italian Twin Register: Advances in Cohort Recruitment, Project Building and Network Development

Abstract

The Italian Twin Register has been in place for more than 10 years. Since its establishment, it has been focusing, on the one hand, on a continuous update of the existing information, and on the other hand, on new phenotypes and sample collection. Demographic data on about 140,000 twins have been updated using the municipality registries. The Italian Twin Register has been carrying out several new studies during the last few years. A birth cohort of twins, Multiple Births Cohort Study, has been started and the enrollment is ongoing. For this cohort, data on pregnancy and birth are collected, and periodical follow-ups are made. DNA is being collected for the twins and their parents. In the area of behavioral genetics, most efforts have been directed to psychological well being assessed with self-reported tools. Research on age-related traits continues with studies on arteriosclerosis development, early biomarkers in mild cognitive impairment, and the relation between lifestyle habits and mutagen sensitivity. The Italian Twin Register biobanking has grown in its size and in its know-how in terms of both technical issues and ethical procedures implementation. Furthermore, attitudes toward biobank-based research, together with willingness and motivation for donation, are being investigated. A valuable key resource for the Italian Twin Register is the possibility of linking twin data with disease registries. This approach has been yielding several important results, such as the recent study on the heritability of type 1 diabetes.

Vertebral Artery Diameter and Flow: Nature or Nurture

“…A total of 172 Italian clinically asymptomatic twins from Padua, Perugia, and Terni (54 monozygotic /MZ/, 32 dizygotic /DZ/ twin pairs; mean age 50 ± 16 years) recruited from the Italian Twin Registry underwent echo color‐coded Doppler sonography of the VAs . Twin pairs from other ethnicities were not involved in the study.…”

“…A total of 172 Italian clinically asymptomatic twins from Padua, Perugia, and Terni (54 monozygotic /MZ/, 32 dizygotic /DZ/ twin pairs; mean age 50 ± 16 years) recruited from the Italian Twin Registry underwent echo color-coded Doppler sonography of the VAs. 12 Twin pairs from other ethnicities were not involved in the study. Opposite-sex dizygotic twin pairs were excluded because their inclusion could bias the heritability estimates upward in the presence of sex-specific environmental or X chromosome effects.…”

The Italian Twin Registry: An Update at 18 Years From Its Inception

“…Different phenotypes have been investigated by the ITR since its inception 18 years ago, and data collection strategies vary according to study design and research aims (Brescianini et al, 2013;Fagnani et al, 2006). In particular, for most studies, information is obtained using self-administered standardized questionnaires through regular mail.…”

Development of a Pilot Project on Data Sharing among Partners of the Italian Hub of Population Biobanks (HIBP): Association between Lipid Profile and Socio-Demographic Variables

“…A notification message generated by the website at the end of data upload guaranteed the data transfer and receipt. Each partner participating in the pilot project uploaded data for their specific collection: EURAC (Micros-study) 8 , CIG (GEHA-project) 9 , CNESPS (FINE, 10 MATISS, 11 MONICA, 12 OEC1998, 13 Italian Twin Register, 14 and IPREA 15 studies), MOLIBANK (Moli-Sani project) 16 . CNESPS contributed six different collections; since each of these studies had been performed independently the data had not been harmonized.…”