title: Sri Lankan Twin Registry.
abstract: Sri Lanka is an island with genetic diversity between the five main population groups. Our twin registry is the first in the developing world. Initially, we established a volunteer cohort of 4600 twin pairs through a competition advertised in the media. In addition, we have volunteer cohorts, birth registration-based cohorts through hospitals, and community-based cohorts. There is also a nationwide population-based younger twin cohort (1992-1997) traced through the Department of Birth and Death Registration. Additionally, we have adapted a Zygosity determination questionnaire and validated it. Establishing ethical guidelines for twin research was a priority because the field of bio-ethics is at an early stage of development in Sri Lanka. These guidelines were from a developing world perspective. A sister organization, the Multiple Birth Foundation, was formed to cater to twins and their special needs and to represent their interests, and several branches have been formed. We intend to build capacity by establishing a genetic lab and through crosscultural collaboration. Our vision is to establish a multidisciplinary research foundation. Based on our research findings, we plan to build services to cater to needs of twins by working with professionals, statutory services and government policy makers.
authors.affiliation: Section of Epidemiology, Institute of Psychiatry, Kings College, University of London, Essex, UK. spjuats@iop.kcl.ac.uk
authors.forename: Athula
authors.initials: A
authors.lastname: Sumathipala
authors.forename: Sisira
authors.initials: S
authors.lastname: Siribaddana
authors.forename: Nimali
authors.initials: N
authors.lastname: De Silva
authors.forename: Devaka
authors.initials: D
authors.lastname: Fernando
authors.forename: Nihal
authors.initials: N
authors.lastname: Abeysingha
authors.forename: Rohana
authors.initials: R
authors.lastname: Dayaratne
authors.forename: Deepthi
authors.initials: D
authors.lastname: De Silva
authors.forename: Narada
authors.initials: N
authors.lastname: Warnasuriya
authors.forename: Mathew
authors.initials: M
authors.lastname: Hotopf
mesh_terms: D001719:Birth Certificates; D015331:Cohort Studies; D003644:Death Certificates; D003906:Developing Countries; D004992:Ethics, Medical; D005260:Female; D014644:Genetic Variation / Q000235:genetics; D006801:Humans; D008297:Male; D010344:Patient Advocacy; D011159:Population Surveillance / Q000379:methods; D017410:Practice Guidelines as Topic; D012042:Registries / Q000706:statistics & numerical data; D013188:Sri Lanka; D011795:Surveys and Questionnaires; D018433:Twin Studies as Topic / Q000379:methods* / Q000706:statistics & numerical data; D014427:Twins / Q000235:genetics / Q000523:psychology / Q000706:statistics & numerical data