What is a Twin Registry?

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What is a Twin Registry?

By Christa D. Reed, Publisher/Editor-in-Chief

Have you ever wondered what a Twin Registry is?  According to the National Twin Registry website, twin studies are considered to be the gold standard for research when investigating the relative importance of genetics and environmental influences to the development of complex traits and diseases in human populations.

Because of these factors, the use of twins can significantly enhance the statistical power of a particular genetic study by limiting the amount of genetic and/or environmental variability. Fraternal twins, on average, share about 50% of their segregating genes while identical twins share all of their genes.  Both types of twin pairs often share similar pre- and post-natal environments as well so this makes for a perfect participant.  By determining the similar rates for a particular disease or trait among identical and fraternal twins, they can ascertain whether the risk factors for that disease or trait are hereditary, environmental, or some combination of these.

Using DNA profiles and clinical and questionnaire data, Twin Registries can compare similarities and differences between identical and fraternal twin pairs to estimate the importance of genetic and environmental influences in a wide range of common conditions such as osteoporosis, arthritis, diabetes, asthma. So having twins participate in these studies helps to continue important research for common conditions, leading to advances in science, medicine and future potential therapies.

The Twin Research Registry at SRI, an independent, nonprofit research and development institute was established in 1995 by SRI's Center for Health Sciences.   Led by Director Gary Swan he explains, "Twins - with their similar genetic make-up - represent an ideal way to study various health and behavior issues and determine more exactly what influence genetic factors play and what influence environmental factors may play.  Twin studies have provided scientific insights into such issues as diabetes, heart disease, obesity, as well as alcohol and tobacco use. By identifying a genetic component to these and other health issues, we can target early prevention and treatment efforts."

What types of studies do they conduct?

There are numerous studies being conducted by Twin Registries.  The Twin Registry at SRI currently includes more than 2,600 adult twin registrants and their Registry members have participated in studies focusing on the pharmacokinetics of nicotine, metabolism of commonly used medications, genetic susceptibility to cancer-causing chemicals, and sleep patterns in young twins.

The Mid-Atlantic Twin Registry, located in Richmond, Virginia and started as the Virginia Twin Registry in the 1970s and has evolved over the years and combined Virginia, North and South Carolina Registries into what is now the Mid-Atlantic Twin Registry has been researching twin pairs for years. Some of their past studies include studies on Epilepsy; Cardiovascular disease; Diabetes; Cancer; Obesity; Attention-deficit hyperactivity disorder; Clinical depression; Pregnancy complications; Alcohol, nicotine and other drug abuse; and Parenting styles; just to name a few.

Examples of Current Studies

Presently, SRI International is seeking twin pairs of a variety of ages to participate in a Seasonal Flu Vaccine Study, sponsored by the National Institutes of Health- to develop more effective flu vaccines.  The Mid-Atlantic Twin Registry is seeking participants for studies like: The Factors in Human Aging study; Factors that affect human development and aging; and Genes, Environment and the Development of Substance Use.  The Michigan Twin Registry is currently seeking twin pairs for the following studies: Twin Study of Behavioral and Emotional Development; A Study of Hormones and Behavior across the Menstrual Cycle; and Opposite-Sex (Male-Female) Twin Adolescent Study of Eating, Mood, and Hormones.  The University of Washington Twin Registry is conducting studies covering Sleep Duration and Metabolism in Twins; An Interdisciplinary Study in Twins: Taste Perception, Hormonal and Brain Response to Food; and Inflammation and Obesity in Twins.

How do I register my twins?
Registration is fast and easy and with the numerous twin registries located throughout the US and world (see side-bar for a list of Twin Registries) it’s easier than ever to register your twins’ data online and it only takes a few moments.  Twin studies are voluntary and provide essential data and information to advance research and medicine so most that participate feel glad to contribute.  According to the Mid-Atlantic Twin Studies organization, their studies often compensate twins for their participation with tokens of appreciation-usually money or a small gift and they receive a biannual newsletter containing articles about twins as well as stories and photos of fellow members and updates on upcoming events for twins.  They also invite their participants to attend special twin events, such as twins’ days at amusement parks with discounted tickets.

List of Twin Registries in the US:

Colorado Twin Registry
University of Colorado at Boulder
Institute for Behavioral Genetics
1480 30th St
Boulder, CO 80303
(303) 492-7362

Massachusetts Twin Registry
Dr. Michael Lyons
Boston University
Department of Psychology
64 Cummington Street
Boston, MA 02215
(617) 358-TWIN [8946]

Michigan State University Twin Registry
Dr. S. Alexandra Burt's Lab
37B Psychology Building, MSU
East Lansing, MI 48824

Mid-Atlantic Twin Registry
PO Box 980617
Richmond, VA 23298

Minnesota Twin Family Registry
Department of Psychology
University of Minnesota
Minneapolis, Minnesota

National Twin Registry
National Institutes of Health      
111 T.W. Alexander Drive
Research Triangle Park, NC 27709
(919) 541-3345

Twin Research Registry at SRI International
Center for Health Sciences
SRI International
333 Ravenswood Avenue
Menlo Park, CA 94025
1-800-SRI-TWIN (1-800-774-8946)

University of Washington Twin Registry
Center for Clinical & Epidemiological Research
Box 359780
1730 Minor Avenue, Suite 1760
Seattle, WA 98101

International Twin Registries:
Australian Twin Registry
The University of Melbourne
Website: http://www.twins.org.au

Combined Organization of Multiple Birth Organizations (COMBO)
Website:  http://web.mac.com/madcock313/Site/Welcome.html

Department of Twin Research & Genetic Epidemiology
Kings College of London / University of London
Website: http://www.twin-research.ac.uk/

Finnish Twin Cohort Study
Website: http://www.twinstudy.helsinki.fi/

International Society for Twin Studies

Website:  http://www.ists.qimr.edu.au

Netherlands Twin Registry (NTR)
Website: http://www.tweelingenregister.org/index_uk.html

Sri Lankan Twin Registry

Website: http://www.infolanka.com/org/twin-registry/


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