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Sri Lankan Twin Registry

Published online by Cambridge University Press:  21 February 2012

Athula Sumathipala*
Affiliation:
Section of Epidemiology, Institute of Psychiatry, Kings College, University of London, UKspjuats@iop.kcl.ac.uk
Sisira Siribaddana
Affiliation:
Sri Jayewardenepura General Hospital, Sri Lanka
Nimali De Silva
Affiliation:
Faculty of Medical Sciences, University of Sri Jayewardenepura, Sri Lanka
Devaka Fernando
Affiliation:
Faculty of Medical Sciences, University of Sri Jayewardenepura, Sri Lanka
Nihal Abeysingha
Affiliation:
Faculty of Medical Sciences, University of Sri Jayewardenepura, Sri Lanka
Rohana Dayaratne
Affiliation:
General Hospital, Ratnepura, Sri Lanka
Deepthi De Silva
Affiliation:
Faculty of Medicine, University of Keleniya, Sri Lanka
Narada Warnasuriya
Affiliation:
Faculty of Medical Sciences, University of Sri Jayewardenepura, Sri Lanka
Mathew Hotopf
Affiliation:
Department of Psychological Medicine, Institute of Psychiatry, Kings College, University of London, UK
*
*Address for correspondence: Athula Sumathiapala, Section of Epidemiology, Institute of Psychiatry, Kings College, University of London, 33 Ripley Road, Ilford, Essex IG3 9HA UK.

Abstract

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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.

Type
Articles/Sri Lanka
Copyright
Copyright © Cambridge University Press 2002