Sumathipala, A.

10^th International Congress on Twin Studies, South Kensington, London | International Society for Twin Studies

Twin Research and Human Genetics, Volume 4, Issue 3, Page 209, Abstract 235S

doi:10.1375/twin.4.3.168

Abstract

Commitment against obstacles and basic knowledge was vital, but books and journals were a scarcity. This demanded networking with experienced twin researchers. A partnership model for collaboration was used for mutual scientific benefits but not for economically cheaper research in the developing world. Forming a multi-disciplinary team was essential, but for locals twin research was new. Funding was hardest without prior twin research. We were compelled to seek help from commercial establishments but were aware of conflict of interests. Therefore, guidelines were developed on bioethics, consent, data collection, storage and access to the twin database and human biological material, funding, commercial exploitation, international collaboration, and authorship to safe guard the Sri Lankan interests as the moral “rights” and “wrongs” are not absolute but vary with the culture. We initiated a volunteer register launching a competition through media. 4684 multiples registered. Most were less than 30 years. Adaptation and preliminary validation of a zygosity questionnaire was carried out. Using birth records to trace younger twins were feasible, but encountered many problems for older twins. Use of different strategies to establish a population-based registry is possible as evident by feasibility studies. Twins born in the whole island from 1992 are available to us through the Department of Birth Registration. We are now supported by a grant from the Wellcome Trust. Newsletters for twins and researchers are published. Local capacity building is in progress. A Multiple Birth Organisation was formed to represent the interests of multiples and to raise awareness on their issues. It will work with professionals, statutory organisation to initiate service development.

De Silva, N., Sumathipala, A., Fernando, D.J.S., Abeysingha, N., Siribaddana, S.H., Dayaratne, D.A.R.K., De Silva, D., & Warnasuriya, N.D.W.

10^th International Congress on Twin Studies, South Kensington, London | International Society for Twin Studies

Twin Research and Human Genetics, Volume 4, Issue 3, Page 179, Abstract 061P

doi:10.1375/twin.4.3.168

Abstract

Population based twin registers are not common outside Scandinavia, particularly in the developing world. Sri Lanka has a 98% accuracy of birth registration. However only since 1992 these records have been computerized at the Central Birth Registration Department including the details of the twin births. These details are complete only up to 1997.

We scrutinised those computerized records for the year 1992, to look into the feasibility of using it to obtain a twin database. A total of 3189 twins were identified out of 356,842 births registered at the at the Registrar General Department for the year 1992, giving a twining rate of 8.93 per 1000 registered births. Higher numbers of twins were registered from major urban centers where the Teaching, Maternal, General, Provincial and Base hospitals are situated. This finding was consistent for the whole country. It was evident that there is a large population based twin database for the whole country from 1992–1997. 1998–2000 data is not yet computerised. To obtain a cohort of twins since birth was a possibility provided that there was a facility to get all the prospective births from now onwards. Support of the statutory services was thus requested and was granted. Therefore all prospective twin births will be directly reported to the Twin Registry, at the time of birth registration. This prospective birth cohort for the whole country will be available for many different projects in the future.

Dayaratne, D.A.R.K., Sumathipala, A., Fernando, D.J.S., Siribaddana, S.H., De Silva, N., & Abeysingha, N.

10^th International Congress on Twin Studies, South Kensington, London | International Society for Twin Studies

Twin Research and Human Genetics, Volume 4, Issue 3, Page 177, Abstract 054P

doi:10.1375/twin.4.3.168

Abstract

To expand the National Twin Registry of Sri Lanka to a population based register, we examined the feasibility of tracing older twins by inspecting birth records and recruiting them by postal invitation and in-person contact.

Methods. Birth records at a divisional secretariat reported from 2 maternity hospitals between the years of 1954–1970 were scrutinised randomly to identify twins. These 2 hospitals had the highest twin delivery rates for the whole country. We identified 310 twin pairs and a postal questionnaire was sent. Research assistants visited a cohort of non-respondents (71) in the postal survey.

Results. 620 twins were identified after perusing 20,700 birth records. Estimated twining rate, was 14.98 twin births for 1000 registered births for a year. In the postal survey, 37 (12%) responded and 62 letters were returned (20%), as twins were no longer in the postal address. Both were living in 20 pairs, one each in 15 pairs, and both dead in 2 pairs. In the field visits, 42 (59.2%) addresses were located. Information was available on 16-twin pairs Both were living in 8 pairs, one each in 4 pairs, and both dead in 4 pairs. At least one twin was traced in 10 pairs (14%). Both postal and field survey gave a low yield. This finding is different from tracing younger twins born between 1985–1997 by using the same methods. Migration, urbanization and development in the country may have affected tracing older twins’ from the birth record addresses, which are decades old.