Playing a vital role in the Northwest Association of Mothers of Twins Club, the purpose this committee is to enable the cooperation and participation in research pertaining to multiple births. Completed forms are used to collect information for statistical purposes and to locate specific type of multiples.
Research Forms (Members)
Providing our membership with information on research studies and to make them aware of how to participate in upcoming research projects, research forms are maintained and collected by our Research Chair. This individual keeps our membership updated on open studies related to multiples, outcome findings, and provides members and researchers statistical information and/or member contact information (upon request and permission).
To participate, click & complete the form below and email it to your delegate. (You can fill it out now, but remember to save it to your computer!)
Research (Outside Organizations)
Researchers from organizations outside of NWAMOTC contact us from time to time looking for certain types or ages of multiples. While we may advise our members of the study – participation is strictly voluntary. No pertinent information will ever be given without prior consent of a member.
Research forms also have the potential to help connect our own members with concerns about medical and/or social issues. One of the interesting responsibilities of Research is to report on data collected and retrieved from the completed forms and publish findings in the TOG.
Please take time to fill out a Research form! You are an important member of the Northwest Association Family and your input is greatly needed!
Demystifying the MRI
Several studies at the UW Twin Registry are now using functional MRI studies to see what areas of the brain are active when a person is resting or doing certain tasks. Researchers in the BRAT study use MRIs to study brain responses to different foods in order to better understand appetite. Researchers in the MAPP study use MRIs to investigate possible changes in the brain and nervous system that might be related to chronic pelvic pain.
If you are invited to participate in a research study that includes a brain MRI, the research coordinator will give you more information and answer all your questions. We thank you in advance for thinking about having a research MRI.
Mood and Methylation Study
While identical twins are born with the same set of genes, their lifetime experiences (environment) may differ. These environmental differences may cause small changes in how their genes are regulated (turned on or off). Such changes are called epigenetic modifications. One type of epigenetic modification is called DNA methylation.
This study is recruiting identical twin pairs who differ in their mood histories: one twin has had persistent feelings of sadness or emptiness, and/or loss of interest or motivation at any time in their life, while the other twin has no history of these experiences. DNA methylation will be analyzed to see what differences there are between the twins. Some goals of the study are to better understand how gene regulation may affect mood experiences such as sadness or lack or motivation, and to increase knowledge about how your environment may affect your behavior and health.
Each potential study participant will have a phone interview. If both twins are a good fit for the study and choose to participate, they will do study procedures at home and have a one-hour in-person visit to the University of Washington Medical Center in Seattle. The at-home procedures are completing questionnaires and collecting samples of saliva, stool and toenail clippings. The in-person visit includes a blood draw, urine sample collection, physical measurements, and completing questionnaires.
Health & Wellbeing
The Health & Wellbeing study is an ongoing study of the UW Twin Registry. It is a type of study called a “longitudinal research project,” which involves studying the same group of individuals over an extended period of time. The goals of this study are to understand how genetic and environmental factors influence human health, disease and behavior, and to see how your health changes over time.
Data collection began in 2010, when we mailed the first Health & Wellbeing questionnaire to all members of the UW Twin Registry. The questionnaire contains questions about health issues, habits, thoughts and beliefs.
Beginning in 2013, members of the UW Twin Registry will receive an invitation to complete the Health & Wellbeing questionnaire online. For some twins this will be a follow-up to the questionnaire they completed at some time in the past few years. For others it will be the first questionnaire they fill out, to establish a baseline time-point for data collection in the future.
Invitations to complete the Health & Wellbeing questionnaire will be sent via email to current UW Twin Registry members with a valid e-mail address.
MAPP Study of Men with IBS Symptoms
MAPP (Multidisciplinary Approach to the Study of Chronic Pelvic Pain) is a national study that aims to better understand chronic pelvic pain. The UW Twin Registry continues to recruit female twin pairs to participate in the MAPP Female Twin Study.
Recruitment has now expanded to include individual men who experience symptoms of abdominal pain or discomfort, diarrhea, or constipation, or who have been diagnosed with irritable bowel syndrome (IBS). The MAPP Male Study is not a twin study, which means that you can participate in the study without your twin, and your interest in possibly participating will not be discussed with your twin.
Participation in the study consists of a 4-hour visit to our clinic in Seattle, and a 60-90 minute visit to the University of Washington Medical Center (UWMC). The clinic visit includes questionnaires, a brief physical exam, a blood draw, a cheek cell swab, urine sample collections, and a pressure sensitivity test. A series of MRI scans are performed during the visit to the UWMC.
Men who are potentially eligible for this study will be sent a letter by email which contains a link to a brief online screening questionnaire. A study coordinator will call men who may be eligible, to continue the screening process and to provide more information about the study
What safeguards protect UW Twin Registry members who participate in research studies?
The University of Washington (UW) Twin Registry takes many precautions to protect the rights of its members.
Federal regulations require that all research conducted by federally funded institutions must be overseen by an independent ethical review committee called an Institutional Review Board (IRB). The UW Twin Registry works closely with our IRB committee to review each study to make sure that:
- The rights of participants are protected.
- Participants are not subject to unreasonable harm (physical and/or emotional).
- Information about participants is kept confidential.
Before any research project begins recruiting participants, the researchers submit their study protocol for review by the IRB. The IRB looks closely at how participants will be recruited, what tests or procedures the participants will be asked to do, and how the participant’s data will be used. After the research has begun, researchers must submit regular progress reports to the IRB, as well as reports of any problems that occurred that might potentially harm the participants
Twin Study of Biological Markers for PTSD
The main purpose of this study is to increase our understanding of brain function in post-traumatic stress disorder (PTSD). PTSD is a condition that may affect people after they experience an extremely stressful or frightening event. The study is being conducted by Dr. Lisa Shin of The Massachusetts General Hospital and Tufts University and Dr. Roger K. Pitman of The Massachusetts General Hospital and Harvard Medical School.
This study is recruiting identical (MZ) twins discordant for combat, meaning one twin has been in combat and the other has not. This question is included in the initial enrollment survey. Twins potentially eligible for this study will be sent an introductory letter and/or email about the study. If you are interested in participating in this study, with your permission, your name and contact information will be passed along to Dr. Shin’s study coordinator.
The study will take place at the Massachusetts General Hospital in Boston. Participants will have a clinical evaluation which includes a psychiatric diagnostic interview, a blood draw, and the completion of several paper-and-pencil questionnaires. In addition, there will be several procedures that use a technique called “functional magnetic resonance imaging” (fMRI) to measure your brain activity while you perform various tasks. The total time required of you will be two full days for the study visit, plus time for travel to and from Boston. The investigators will arrange and pay for your travel and hotel accommodations.
The Genetics and Epigenetics of Healthy Aging in Twins (HAT)
Aging is complex process, involving both genetic and non-genetic factors. Genetics contribute to the rate of change for bodily functions and risk of disease, but these changes can also be influenced by the environment. The goal of this study is to learn more about the genes that are related to healthy aging, and how the aging process is influenced by environmental factors. By looking at genetic information, physical condition, family history, medical history, and life experiences across participants, we can determine how these factors work together to create the overall aging experience.
We are recruiting identical (MZ) and fraternal (DZ) same-sex twin pairs who are over the age of 65. The study does not require an in-person visit in Seattle. All data collection for this study is done at home. Participants complete a questionnaire, perform two tasks related to balance, collect saliva, and collect a very small blood sample from a finger. At the end of the collection period, the participants ship everything back to the researchers in a prepaid box.
Twins potentially eligible for this study will be sent a letter via mail with more information. A study coordinator will call each twin individually to complete a brief screener over the phone to confirm that they are a good fit for the study
Physical Activity in Twins (PAT)
This study explores the role of the built environment in supporting healthy lifestyles. The built environment is defined as human-made surroundings, such as buildings, streets, and transportation systems, which support or hinder human activity. Although this topic has gained increasing attention from many researchers over the last several years, the influence of the environment on behaviors and health is not fully understood.
This study recruits identical twins living within defined boundaries of the Puget Sound region. Twins must not live with their parents, must not live together, and they must have lived at their current residence for at least one year.
Participation in this study includes an in-person visit to our office in Seattle, followed by two weeks of data collection at home. During these two weeks, participants wear a GPS which records their locations throughout the day. They also wear an activity monitor which records their levels of activity (similar to a pedometer). They carry a cell phone, provided by the study, to record details about their locations and activities.
The recruitment lists for this study are created by searching our database for twins who do not share the same address. If you have moved since joining the Registry, or if you have not updated your address recently, please send an email to firstname.lastname@example.org* to update your address, or call 1-888-223-0868
Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP)
The goal of MAPP is to better understand how pain is felt in people with certain conditions (interstitial cystitis and chronic prostatitis), which cause chronic pelvic pain. There are two studies being done at the UW Twin Registry: one is recruiting female twins, and the other is recruiting individual males (without their twins).
The MAPP Female Twin Study is a study of female MZ and DZ twins. Both twins must participate together. We include pairs in which one twin has chronic pelvic pain symptoms and the other twin does not. We also include pairs in which neither twin has symptoms.
Participation in the MAPP Female Twin Study consists of procedures done at home as well as at a two-day visit to our clinic in Seattle. The at-home procedures involve collecting saliva samples and completing a telephone interview. The in-person visit includes questionnaires, a brief physical exam, sensitivity testing (to heat, cold and pressure), blood draws, a cheek cell swab, urine sample collections, and a series of MRI scans.
The MAPP Male Study is a study of men who experience symptoms of abdominal pain or discomfort, diarrhea, or constipation, or who have been diagnosed with irritable bowel syndrome (IBS). This is not a twin study, so men can participate individually, without their twin.
Participation in the MAPP Male study consists of a 4-hour visit to our clinic in Seattle, and a 60-90 minute visit to the University of Washington Medical Center (UWMC). The clinic visit includes questionnaires, a brief physical exam, a blood draw, a cheek cell swab, urine sample collections, and a pressure sensitivity test. MRI scans are performed during the visit to the UWMC
Brain Regulation of Appetite in Twins (BRAT)
The goal of this study is to learn more about the regulation of appetite, in order to better understand how the central nervous system regulates appetite and food consumption.
This study requires both members of the twin pair to come to the University of Washington Medical Center together for one eight-hour visit. Blood samples will be collected over the course of the 8-hour visit. Participants will also be asked to complete questionnaires, have a DEXA scan (a type of x-ray), and have MRI scans. Meals and snacks will also be provided as part of the study.