The Italian Twin Register: new cohorts and tools, current projects and future perspectives of a developing resource.
Since its start as a database of "possible twins", the Italian Twin Register has developed remarkably in terms of twin approach and recruitment, data-management tools, the cohorts enrolled, and the breadth of information gathered, making the Italian Twin Register a valuable resource for genetic epidemiological research. The Italian Twin Register is a random population of twins at both the national level and within targeted geographical areas or birth cohorts. Further, the Register is linked with disease records and has recently implemented a web-based method for volunteer twin recruitment specifically designed to promote the Register and to disseminate information on genetic epidemiology. To date, approximately 9000 twins have joined the Italian Twin Register, the majority of whom (approximately 70%) represent young adults aged 20 at time of enrollment. Although the total number of twins recruited to date is far below the expected figure initially predicted, the newly established standardized procedures guarantee an increase of around 2000 twins each year. Following the collaboration between the Italian Twin Register and the main Italian nonprofit association for blood donors, twin DNA sampling and storage has recently accelerated contributing to the large amount of phenotypic data collected. The Italian Twin Register is currently involved in both population and clinical based studies on various complex phenotypes and diseases, some conducted within large European consortia.
Fagnani
Corrado
C
National Center for Epidemiology, Surveillance and Health Promotion, Istituto Superiore di Sanità, 00161 Rome, Italy. corrado.fagnani@iss.it
Brescianini
Sonia
S
Cotichini
Rodolfo
R
D'Ippolito
Cristina
C
Dukic
Tatjana
T
Giannantonio
Lorenzo
L
Medda
Emanuela
E
Nisticò
Lorenza
L
Patriarca
Valeria
V
Pulciani
Simonetta
S
Rotondi
Daniela
D
Toccaceli
Virgilia
V
Stazi
Maria Antonietta
MA
D000293:Adolescent; D000328:Adult; D000368:Aged; D002648:Child; D015331:Cohort Studies; D003219:Confidentiality; D003625:Data Collection; D016208:Databases, Factual; D005260:Female; D006801:Humans; D007558:Italy; D008297:Male; D008875:Middle Aged; D012042:Registries / Q000941:ethics / Q000706:statistics & numerical data; D018433:Twin Studies as Topic / Q000941:ethics / Q000706:statistics & numerical data / Q000639:trends; D014429:Twins, Dizygotic; D014430:Twins, Monozygotic