Establishing a twin register in Sri Lanka

Sumathipala, Athula; Fernando, D. J. S.; Siribaddana, Sisira; Abeysingha, MRN; Jayasekare, RW; Dissanayake, V. H. W.; Silva, N De

doi:10.1375/twin.3.4.202

Cited by 12 publications

(16 citation statements)

References 6 publications

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“…It was envisaged that it would become a platform for a multidisciplinary approach toward twin research in the low-and middleincome country (LMIC) context. The evolutionary process of the SLTR has been reported previously (Siribaddana et al, 2006;Sumathipala et al, 2000aSumathipala et al, , 2002.…”

Section: Brief History Of Sltrmentioning

confidence: 56%

“…Several strategies for twin recruitment were employed; initial enrolling of volunteer twins through media campaigns was followed by tracing of twins through birth RECEIVED Male-male Female-female Male-female Missing Total pairs Below 10 161 189 109 0 459 11-20 899 1,032 642 6 2,579 21-30 738 867 449 3 2,057 31-40 319 487 279 7 1,092 41-50 162 197 134 5 498 51-60 59 77 73 3 212 61-70 33 47 25 0 Below 10 290 249 204 34 777 11-20 689 749 466 60 1,969 21-30 612 637 441 83 1,773 31-40 571 647 508 110 1,836 41-50 451 468 415 146 1,480 51-60 263 297 276 118 954 61-70 118 152 128 77 475 71-80 36 65 45 46 192 81+ 22 18 05 19 64 3,052 3,282 2,488 698 9,520 registration records and conduction of population-based recruitment (Sumathipala et al, 2000a(Sumathipala et al, , 2001(Sumathipala et al, , 2003. Therefore, the SLTR has mainly a volunteer cohort and a population-based cohort (Siribaddana et al, 2006;…”

Section: Brief History Of Sltrmentioning

confidence: 99%

“…Therefore, the SLTR has mainly a volunteer cohort and a population-based cohort (Siribaddana et al, 2006;Sumathipala et al, 2000aSumathipala et al, , 2002. The SLTR is a sustainable program, established through a strategic, multidisciplinary partnership between the Institute for Research and Development (IRD) and Institute of Psychiatry, King's College London.…”

Section: Brief History Of Sltrmentioning

confidence: 99%

“…Population-based registries are rare, even in the West (Boomsma et al, 2002). The uniqueness of the Sri Lankan Twin Registry (SLTR) lies in the fact of it being the first in the developing world (Sumathipala et al, 2000a(Sumathipala et al, , 2002. It is still one of the few large-scale, functioning population-based registries in the developing world (Van Dongen et al, 2012).…”

mentioning

confidence: 99%

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The Sri Lankan Twin Registry: 2012 Update

Sumathipala

Siribaddana²,

Hotopf

et al. 2013

Twin Res Hum Genet

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The Sri Lankan Twin Registry (SLTR), established in 1997, is a unique resource for twin and genetic research in a low- and middle-income country (LMIC). It comprises of a volunteer cohort of 14,120 twins (7,060 pairs) and 119 sets of triplets, and a population-based cohort of 19,040 (9,520 pairs) twins and 89 sets of triplets. Several studies have been conducted using this registry, including the Colombo Twin and Singleton Study (CoTaSS 1; 4,387 twins, 2,311 singletons), which have explored the prevalence and heritability of a range of psychiatric disorders as well as gene-environmental interplay. Currently, a follow-up study (CoTaSS 2) of the same cohort is underway, looking at the prevalence and interrelationship of key cardiovascular and metabolic risk markers (e.g., metabolic syndrome). A significant feature of CoTaSS 2 is the establishment of a biobank. Current SLTR work is extending beyond mental health and the interface between mental and physical health to new horizons, extending collaborations with the wider global twin research community. Ethics and governance have been given special emphasis in the initiative. Capacity building and public engagement are two crucial components. Establishment of a state-of-the-art genetic laboratory was a major accomplishment. SLTR is a classic showcase of successful North-South partnership in building a progressive research infrastructure in a LMIC.

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Section: Brief History Of Sltrmentioning

confidence: 56%

Section: Brief History Of Sltrmentioning

confidence: 99%

Section: Brief History Of Sltrmentioning

confidence: 99%

mentioning

confidence: 99%

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The Sri Lankan Twin Registry: 2012 Update

Sumathipala

Siribaddana²,

Hotopf

et al. 2013

Twin Res Hum Genet

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“…The National Twin Registry of Sri Lanka was established in 1997 (Sumathipala et al, 2000). We have previously reported on the feasibility of using different methods to recruit younger twins up to 15 years of age (Sumathipala et al, 2001).…”

Section: Introductionmentioning

confidence: 99%

Challenges in Recruiting Older Twins for the Sri Lankan Twin Registry

et al. 2003

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T he National Twin Registry of Sri Lanka was established in 1997 as a volunteer register. To extend it to a populationbased register, we examined the effectiveness of tracing older twins by inspecting birth records and recruiting them by postal invitation and in-person contact. Birth records at a divisional secretariat reported from 2 maternity hospitals between the years of 1954-1970 were scrutinised to identify a random sample of twins. These hospitals had the highest twin delivery rates for the whole country. We identified 620 twins and a questionnaire was mailed to them. Research assistants visited a cohort of non-respondents (71) in the postal survey. These 620 twins were identified after perusing 20,700 birth records. The twinning rate was estimated at 29.95 ([620/20700] × 1000) twins per 1000 registered births ). In the postal survey, 37 (12%) responded and 62 letters were returned (20%). Both twins were still alive in 20 pairs, one was still alive in 15 pairs, and both twins were dead in 2 pairs. During field visits, 42 (59.2%) addresses were located. Information was available on 16 twin pairs. Both twins were alive in 8 pairs, one each in 4 pairs, and both were dead in 4 pairs and at least one twin was traced in 10 pairs (14%). Both the postal and the 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 might have affected tracing older twins from the birth record addresses, which were decades old.

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Use of an Electronic Medical Record to Create the Marshfield Clinic Twin/Multiple Birth Cohort

Mayer

Kitchner

et al. 2014

Genet. Epidemiol.

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Population-based genetic analyses, such as the Genome-Wide Association Study (GWAS), have proven powerful for describing the genetic complexities of common disease in epidemiologic research. However, the significant challenges faced by population-based study designs have resulted in a revitalization of family-based approaches, including twin studies. Twin studies are unique in their ability to ascertain both heritable and environmental contributions to human disease. Several regional and national twin registries have been constructed using a variety of methods to identify potential twins. A significant challenge in constructing these large twin registries includes the substantial resources required to recruit participants, collect phenotypic data, and update the registries as time progresses. Here we describe use of the Marshfield Clinic electronic medical record (EMR) to identify a cohort of 19,226 patients enriched for twins or multiples. This cohort defines the Marshfield Clinic Twin/Multiple Birth Cohort (MCTC). An EMR system provides both a mechanism to identify potential twins and a source of detailed phenotypic data in near real time without the need for patient contact outside of standard medical care. To demonstrate that the MCTC can be used for genetic-based epidemiologic research, concordance rates for muscular dystrophy (MD) and fragile-X syndrome, two highly heritable diseases, were assessed. Observations indicate that both MD and fragile-X syndrome are highly correlated among affected twins in the MCTC (P ≅ 3.7E-6 and 1.1E-4, respectively). These findings suggest that EMR systems may not only be an effective resource for predicting families of twins, but can also be rapidly applied to epidemiologic research.

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Establishing a twin register in Sri Lanka

Cited by 12 publications

References 6 publications

The Sri Lankan Twin Registry: 2012 Update

The Sri Lankan Twin Registry: 2012 Update

Challenges in Recruiting Older Twins for the Sri Lankan Twin Registry

Use of an Electronic Medical Record to Create the Marshfield Clinic Twin/Multiple Birth Cohort

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