Popularising Twin Research


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Presented by Sisira Siribaddana MD (nipuna@stmail.lk) at the Public Engagement Workshop, 2-5 Dec. 2008, KwaZulu-Natal South Africa, http://scienceincommunity.wordpress.com/

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Popularising Twin Research

  1. 1. Popularising Twin Research Sisira Siribaddana MD nipuna@stmail.lk
  2. 2. Background <ul><li>Establishment of a National Twin Register in Sri Lanka. Twin Research 2000; 3: 202-202. </li></ul><ul><li>Cross cultural adaptation and preliminary validation of a zygosity determination questionnaire for Sri Lanka. Twin Research 2000; 3 : 205-212. </li></ul><ul><li>Feasibility of using different approaches for recruiting younger twins for Sri Lankan Twin Registry Twin Research 2001; 4 :459-463 </li></ul><ul><li>Sri Lankan Twin Registry. Twin Research 2002; 5 : 424-426 </li></ul><ul><li>Challenges in recruiting older twins for the Sri Lankan Twin Registry Twin Research 2003; 6 :67-71 </li></ul>
  3. 3. <ul><li>Walking the talk </li></ul><ul><li>International collaboration between Kings college, department of psychological medicine, Social genetic and developmental psychiatry research centre, WHO & SLTR </li></ul><ul><li>Capacity building in South </li></ul><ul><li>ethical approval –WHO, IOP (UK), SJU (SL) </li></ul><ul><li>Collaboration from the Ministry of Health, Epidemiology unit </li></ul><ul><li>Unprecedented discussion with various academic bodies </li></ul>
  4. 4. School curriculum change 1997 <ul><li>A Level is a very competitive exam for university entrance </li></ul><ul><li>Projects were introduced, not marked but essential for admissions </li></ul><ul><li>Criticisms-no teacher training no guidance </li></ul><ul><li>We have helped 52 students, teacher student WS </li></ul><ul><li>Platform to published them with a expert comment (“Explorer” magazine) </li></ul><ul><li>Series of how to do it </li></ul>Sri Lankan Twin Registry
  5. 5. Twin Projects Sri Lankan Twin Registry
  6. 6. Gaveshana (Explorer) 11 th issue Sri Lankan Twin Registry
  7. 7. Kirinda Multiple Birth Society Sri Lankan Twin Registry
  8. 8. Anguruwathota Multiple Birth Society Sri Lankan Twin Registry
  9. 9. Kegalle Multiple Birth Society Sri Lankan Twin Registry
  10. 10. Udunuwara Multiple Birth Society Sri Lankan Twin Registry
  11. 11. Locations of Multiple Birth Societies Sri Lankan Twin Registry
  12. 12. Helping Needy twins Sri Lankan Twin Registry
  13. 13. Published Brochures Sri Lankan Twin Registry
  14. 14. Twin Newsletter Sri Lankan Twin Registry
  15. 15. Photos Submitted by Registered Twins/ Triplets Sri Lankan Twin Registry
  16. 16. Hidden Agenda-Increasing Recruitment <ul><li>Colombo Twin & Singleton Survey (COTASS) recruited only adult twins </li></ul><ul><li>(BMC Psychiatry 2008, 8:49 Twin Research & Human Genetics 2006 868-874 ) </li></ul><ul><li>In Colombo district 400 000 forms distributed 340 000 collected using government administration structure to develop population based twin registry, 19332 twins, 4000 randomly selected with 2000 singletons </li></ul><ul><li>Island wide volunteer registry 13626 multiples </li></ul>http://www.irdsrilanka.org/ird/AboutIRD.htm Sri Lankan Twin Registry
  17. 17. Glimpse into the Future-Using Art & Culture as an Inducement to Participate in Research <ul><li>Multiples engage in research through culture (MERC) </li></ul><ul><li>Idea came from Twin Cultural Society - separate organisation but non existent now </li></ul><ul><li>Unanswered questions </li></ul><ul><li>Is this form of recruitment ethically acceptable </li></ul><ul><li>Excess of younger twins, same sex twins, identical twins </li></ul><ul><li>More expensive-token compensation more cheaper? </li></ul><ul><li>WT funded but after funding is approved £ crashed relative to the SL Rupee </li></ul>http://www.infolanka.com/org/twin-registry/ Sri Lankan Twin Registry