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Worldwide Twins Newsletter - Issue 12
International Network of Twin Registries
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Worldwide Twins is the communication platform of the International Network of Twin Registries (INTR), which aims to foster scientific collaboration and promote twin research on a global scale.

The INTR is a working group of the International Society for Twin Studies (ISTS).

In this issue

The Worldwide Twins Newsletter is back inviting all twin registries and cohorts to participate in the continuing creation of the INTR Data and Biospecimens Catalogue. We also highlight the CHOOSE project, aimed at improving care for women and babies affected by Twin-twin Transfusion Syndrome (TTTS), and report on calls for collaborative twin studies in rheumatoid arthritis, breast cancer, autism disorder, cerebral palsy and epilepsy. Enjoy the read!

INTR Data and Biospecimens Catalogue
Join us!

 

The INTR has been building a catalogue of twin data and biospecimens available for new twin studies, as part of its efforts to foster international collaboration in twin research. It will include information on the total number of twin pairs (with breakdowns for zygosity and sex when available), along with the availability of different types of biospecimens. Sixteen twin registries and cohorts have already joined this project.

If you are involved with a twin registry or cohort and are interested in contributing, you can do so by accessing the survey directly or contacting us for more information. 

The CHOOSE Project
The International Collaboration to Harmonise Outcomes for Twin-Twin Transfusion Syndrome (CHOOSE)

Twin-Twin Transfusion Syndrome (TTTS) is a serious condition that can affect monochorionic twin pregnancies (twins that share a single placenta). Without treatment, the risk of one or both twins dying is very high. Even with treatment, there is a risk of death, prematurity and serious health problems in childhood. To enable future trials to measure consistent, meaningful outcomes, the CHOOSE project team is developing a core outcome set (COS) for the treatment of TTTS. They would like to invite you to help them identify the most important outcomes in TTTS.
 
To register for and to complete the first round of the CHOOSE project, please follow this link. If you have any questions or are having problems completing this survey, please send them an email

The CHOOSE project team are: Professor Asma Khalil, Dr Helen Perry, Dr James Duffy, Mr Keith Reed, Professor Ahmet Baschat, Professor Jan Deprest, Professor Kurt Hecher, Professor Liesbeth Lewi, Professor Enrico Lopriore and Professor Dick Oepkes.

Calls for collaboration
Send us an email if you want to include your proposal in our next issue
 

Rheumatoid Arthritis

Prof Frances Williams and colleagues at the Department of Twin Research and Genetic Epidemiology, King's College London, are collecting microbiome samples (saliva and stool) from RA discordant and concordant twin pairs. The study will collect questionnaire data and samples, including access to the rheumatologist for blood test results. If you can contribute to this study, please send Frances an email


Breast Cancer

Prof Tom Mack and colleagues at the Keck School of Medicine, University of Southern California (USA), are reaching out to twins diagnosed with breast cancer in order to understand why some women remain free from breast cancer when other women with the same genetics and upbringing are affected. They are looking for MZ and DZ pairs, either concordant or discordant for breast cancer. If you can contribute, please send Tom an email

 

Autism, Cerebral Palsy, and Epilepsy

Prof Jeff Craig, Deakin University (Australia), is interested in hearing from twin studies that may have MZ twins discordant for autism, cerebral palsy or epilepsy, ideally with either buccal or blood samples. If you can contribute, please send Jeff an email
 

Thanks for reading and see you soon!
This newsletter issue was edited by Lucas Ferreira (University of Melbourne).
Please contact us if you want to know more.
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