Category: Outside Research (Page 1 of 2)

Twin to twin transfusion syndrome

Twin to twin transfusion syndrome (TTTS) is a rare condition that occurs during a twin pregnancy when blood moves from one twin (the “donor twin”) to the other (the “recipient twin”) while in the womb. TTTS is a complication that specifically occurs in identical (monozygotic) twin pregnancies that share the same “egg” sac (monochorionic) that may or may not share the same amniotic sac (monoamniotic). TTTS usually develops between 15 and 26 weeks of pregnancy. The donor twin may be born smaller, with paleness, anemia, and dehydration. The recipient twin may be born larger, with redness, too much blood, and increased blood pressure, resulting in an increased risk for heart failure. Treatment may require repeated amniocentesis during pregnancy. Fetal laser surgery may be done to interrupt the flow of blood from one twin to the other. After birth, treatment depends on the infant’s specific symptoms. The donor twin may need a blood transfusion to treat anemia. The recipient twin may need to have the volume of body fluid reduced. This may involve an exchange transfusion. Medications may be given to treat heart failure in the recipient twin, per the U.S. Department of Health and Human Services/National Institutes of Health

Approximately 15% of Identical Twin pregnancies develop TTTS.

Sources: 

Multiples of America has teamed up with FertilityIQ

Dear Members of Multiples of America,

Have you sought  fertility treatment? If so – we need your help!

We are teaming up with FertilityIQ to encourage  fertility patients to review their fertility doctor.  FertilityIQ will make a donation to Multiples of America for every  review we  provide.

FertilityIQ was started a few years ago by a husband and wife team to ensure other patients get reliable & helpful information on doctors, clinics, costs and more. Everything on the site is free and there are no advertisers on this site. You are encouraged to visit Fertility IQ’s website to learn more about this company before you send in your personal review.

You can leave an anonymous review of your fertility doctor(s) by starting here https://www.fertilityiq.com/survey-intro – make sure to provide lots detail because thousands patients will rely on what you have to say.

A few last notes:

  1. In the review, when asked who referred you to review, type “Multiples”. This will come at the end of your survey assessment. This is how fertility IQ will keep track of the organizations participants.
  1. If you’ve been treated at multiple clinics, you can provide multiple reviews (we get credit for each!)
  1. Feel free to share the link with others you may know that have sought fertility treatments.  Multiples of America, will receive credit for every  review that cites us It doesn’t matter if they are a member of a member club.
  1. The donation window will expire on November 27, 2018, so please take a few minutes to leave your assessment before the closing date!

Please Note: By clicking the link and submitting your assessment to FertilityIQ, you must agree to the terms of use and privacy policy provided by FertilityIQ. Any information provided is done so with the explicit knowledge that it is done willingingly to complete the assessment, with the full knowledge and consent of the user. Multiples of America is not responsible for the content of the FertilityIQ assessment. Multiples of America will not share your contact information with any third parties without express consent.

Sincerely,

Kim England, President
MULTIPLES OF AMERICA
(also known as the National Organization of Mothers of Twins Clubs)
president@multiplesofamerica.org
www.multiplesofamerica.org

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Find us on the web at www.multiplesofamerica.org.

Like us on Facebook at www.facebook.com/NOMOTC.

ICOMBO Survey

Research with multiples contributes to our knowledge of issues relevant specifically to multiples but also has the potential to contribute transformative insights to our understanding of health and disease for the whole population. ICOMBO is gathering information to present to researchers about what multiples (and their families) would like if they are involved in research. The first step is a survey to find out more detailed information about how people feel about being involved in research. It is important that we can get the message to researchers about how we want multiples to be treated, so your input will be very valuable. I know some of the questions may seem a bit odd to those not familiar with what some research studies involve. However, these will help us guide researchers on what we may accept when asked to participate and then they can design their studies accordingly. 

This survey is for both multiples themselves (if they are old enough to make decisions about their involvement in research) and parents of younger multiples.

If possible please complete the survey in English using the following link:
https://www.surveymonkey.com/r/MultiplesResearchEnglish

Alternatively the survey is available in a number of other language options if you would prefer:

Arabic – https://www.surveymonkey.com/r/MultiplesResearchArabic

French – https://fr.surveymonkey.com/r/MultiplesResearchFrench

German – https://de.surveymonkey.com/r/MultiplesResearchGerman

Japanese – https://jp.surveymonkey.com/r/MultiplesResearchJapanese

Spanish – https://es.surveymonkey.com/r/MultiplesResearchSpanish

Note all your responses are anonymous.

Please share far and wide so we can get as many responses as possible. If you have any questions about this survey please contact Carolyn (carolyn@icombo.org). Thank you.

ICOMBO stands for the International Council of Multiple Birth Organisations. We are a voluntary organisation whose aim is to raise awareness of the unique needs of multiple-birth infants, children, adults and their families promoting their health, education and welfare.

Monochorionic Twin Pregnancy Survey

 

 

 

 

 

 

PLEASE PARTICIPATE IN THIS NEW RESEARCH SURVEY!

 

Evergreen Fetal Therapy and Center for Fetal Medicine and Women’s Ultrasound/UCLA are conducting an anonymous survey on women who have been pregnant with monochorionic twins. Monochorionic twins are identical twins and higher order multiples who shared a placenta. Please help us learn more about monochorionic twins and multiples and how they are screened and treated for possible complications (Twin-Twin Transfusion Syndrome (TTTS), Twin Anemia Polycythemia Sequence (TAPS) and other pregnancy complications). You will also help us learn how they are being managed across the United States and the world.

 

Click on link and put into url to begin survey:

https://www.ctrc.medsch.ucla.edu/redcap/surveys/?s=T4837P43EW

 

Thank you for participating and for improving awareness of and treatment for monochorionic pregnancies!

Outside Research Studies

Partnering with the Scientific Community 
Professional Affiliate Members

Title of Study  

Partnering with the Scientific Community  
Professional Affiliate Members
 
Title of Study Researcher
ICATS – Same-Sex Twin Imaging Study (Brain MRI) Antonio Hardan, M.D.
..  
These researchers are Professional Affiliate Members of Multiples of America, Inc. If you are an educator or researcher who would like to find out more about the benefits of becoming a Professional Affiliate Member check out our Affiliate Membership Page.
Additional Outside Researchers
 
Title of Study Researcher
Pathogenic Studies in Families with Twins or Siblings Discordant for Systemic Rheumatic Disorders Frederick W. Miller, M.D., Ph.D.,Clinical Research Program and Principal Investigator
Chinese Twins Separated at Birth Nancy Segal, Ph.D.
Adult Twins Who Are Parents Study Nancy Segal, Ph.D.
Study of Twins with Special Needs Nancy Segal, Ph.D.
Addressing the Issue of Multiples in Randomized Controlled Trials Janine Bernardo
   
Mid-Atlantic Twin Registry Judy Silberg, Ph.D.
The Loss of a Twin in Childhood and Adolescence – Behavioral Significance and a Program for Intervention Nancy Segal, Ph.D.
 Virtual Twin Study Nancy Segal, Ph.D.
 Learning and Motivational Style Barry Tarter with Exact Information
   

 

ICOMBO Survey – Single Parenting of Multiple Birth Children

https://www.surveymonkey.com/r/W6YT7HD

 

Czech version of ICOMBO’s Survey – Single Parenting of Multiple Birth Children

https://www.surveymonkey.com/r/W6FFL9L

 

French version of ICOMBO’s Survey – Single Parenting of Multiple Birth Children

https://www.surveymonkey.com/r/W6GM36B

 

German version of ICOMBO’s Survey – Single Parenting of Multiple Birth Children

https://www.surveymonkey.com/r/W6HHJV2

 

Spanish version of ICOMBO’s Survey – Single Parenting of Multiple Birth Children

https://www.surveymonkey.com/r/W6ZJ6GM

 

Finnish version of ICOMBO’s Survey – Single Parenting of Multiple Birth Children

https://www.surveymonkey.com/r/WZVB5RZ

 

Japanese version of ICOMBO’s Survey – Single Parenting of Multiple Birth Children

https://www.surveymonkey.com/r/WZSTBW6

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