Introduction

National Malaysian twin registry (NMTR) is a non-profit organization which facilitates scientific research involving participation of twins or their family members in order to answer some of the questions of health and wellbeing relevant to Malaysians.

NMTR is a national registry of twin pairs (monozygotic = MZ and Dizygotic = DZ) who are willing to consider participating in health related research. Twins are able to help researchers study the impact of genetic and environmental factors on health and the treatment and prevention of disease in a special way. The federal government through the National Health and Medical Research Council usually fund twin registries around the world in order to put researchers in touch with twins who might be willing to take part in particular projects. In Australia, for example, more than 30,000 pairs of twins have joined the registry, making it the largest volunteer registry of its kind in the world.  However, in some countries such as Denmark, the first twin registry was born in a medical faculty and it was then expanded to the National Twin Registry of Denmark.

Twin registry is playing an important role in the universal fight against disease, the current quest for knowledge about twins and multiple births, and the search for answers to the health questions posed by genetic research. A wide range of research projects have been undertaken in conjunction with the Registries around the world, including studies on alcohol and tobacco use; asthma; cholesterol; diabetes; anxiety, stress, and depression; osteoporosis; heart disease; epilepsy; dietary salt; Alzheimer's disease; eating disorders; prostate size; male infertility; premenstrual tension; endometriosis; oral ulcers; attention deficit disorder; and breast cancer. However, Malaysian socio demographic characteristics, cultural, religious, ecological and environmental health issues should be taken into consideration when interpreting other study results.  Interventions must be tailored according to the differences found in Malaysian society. Our quest for research is therefore specifically focused on Malaysian twins. 

Other research institutes can also benefit from the twin registry.  All requests to use the twin registry should be carefully reviewed. Approved projects must satisfy ethical guidelines and be of significant value to the area of proposed research. Information concerning individuals on the registry is strictly confidential; personal details will not be given out without prior consent.

NMTR is officially launched in June 2008.  The proposal was approved by Ministry of Health and University Kuala Lumpur has provided the Grant for this project.  National Medical Research Registry has also registered the study and approved it in terms of ethical considerations.  NMTR can put researchers in contact with twins and their families to take part in research projects.  Requests can be directed to the NMTR via email as how to precede, how to contact twins and how to obtain ethical approval.

One of the major objectives of NMTR is to provide health information for twins. Twins can be informed through the registry newsletter posted on our website, which provides information concerning health issues, events, news, activities and many of different studies that are currently underway or have just been completed regarding twins. New studies commence every year and twins are contacted whenever they might be appropriate participants for a study. Involvement in a study is always voluntary and twins can withdraw at any stage.

NMTR includes the families of infant, preschool, school age and adult twins who are willing to consider participating in health-related research. Our twins are born or are living in either Peninsular Malaysia or East Malaysia.   Twins and their families are identified for the registry by using publicly available birth records, through public and private school records, university or hospital records. This information is made available only for the purpose of medical research. Twins from any state or country are also welcome to participate.

The NMTR office is located at Ipoh, under Royal College of Medicine, Perak, University of Kuala Lumpur where scientists are studying twins and their families. Directed by Dr. Shayesteh Jahanfar and Distinguished lecturers, Dr. Siva Acchanna and Dr. Sharifah Halima, the MTR is the first twin registry in the country.

UniKL, the home of the NMTR, is a private research university located in the state capital, Kuala Lumpur, Malaysia and consists of many campuses around Malaysia inclusive of Royal Medical College of Perak (RCMP) in the state of Perak.  The RCMP is located near the Ipoh hospital as the main clinical hospital.  NMTR office is close by sharing space with Perak Women for Women organization located at  48 Jalan Dato Lau Pak Khuan, 31400, Ipoh, Perak.

Multiple born and specifically twins of all types, ages and ethnicities living in Malaysia or overseas are welcome to register and be a part of twin family.  To register or find out more, please call (6)05-5469715, send SMS to 0165160224 or email us at twinregistry@rcmp.unikl.edu.my.    You can also visit our website at www.nmtr.org.my.