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Below is a list of our current scholarly contributions and projects.
Status: Ongoing
A multi-phase project evaluating current terminology used in clinical care, research, and public health communication. The initiative examines ambiguity, gaps, and misconceptions, and supports the development of standardized, evidence-based definitions for VTS-related outcomes.
Status: Ongoing
An international collaboration with clinicians, researchers, psychologists, and bereavement specialists to build consensus on communication, diagnosis, and care pathways for VTS. Details will be shared following completion of expert panel phases.
Status: Ongoing
An initiative to translate, adapt, and diversify key educational and bereavement-support materials relevant to families experiencing loss in the context of multiple pregnancy, including those from the Butterfly Project. This work focuses on ensuring that resources are culturally inclusive, linguistically accessible, and sensitive to diverse global family experiences.
Materials are adapted with permission from their original creators; IVTSF’s work centers on translation accuracy, contextual clarity, and enhancing accessibility for different patient populations.
Status: Ongoing
An initiative to translate, adapt, and diversify key educational and bereavement-support materials relevant to families experiencing loss in the context of multiple pregnancy, including those from the Butterfly Project. This work focuses on ensuring that resources are culturally inclusive, linguistically accessible, and sensitive to diverse global family experiences.
Materials are adapted with permission from their original creators; IVTSF’s work centers on translation accuracy, contextual clarity, and enhancing accessibility for different patient populations.
Status: Under development
A longitudinal exploration of emotional, relational, and psychological outcomes among individuals and families who have experienced VTS, including the effects on parenting, identity, and grief over time.
Status: Under development
A project focused on creating evidence-based educational content for global maternal–fetal health audiences. This initiative aims to improve clinician awareness, enhance communication with families experiencing VTS, and provide accessible teaching materials grounded in current research.
Details regarding collaborating organizations will be shared once permissions and publication processes are finalized.
Status: Under development
A long-term initiative to design and implement a secure, ethically governed registry that collects de-identified, patient-reported and clinically informed data related to VTS and multifetal loss. The registry will aim to improve understanding of diagnostic patterns, clinical presentations, psychosocial outcomes, and lived experiences across diverse populations.
Status: Conceptual development
A scientific initiative focused on evaluating and improving existing diagnostic approaches used to detect early VTS and related multifetal outcomes. This project investigates gaps in current assay sensitivity, specificity, and interpretive guidance to identify opportunities for more accurate, earlier, and clinically meaningful detection.
Details regarding assay technologies, collaborators, and methodological innovations will be shared once development milestones and protections are in place.
Status: Conceptual development
A multi-site project investigating how frequently VTS is identified, documented, and communicated across diverse clinical settings around the globe. The study aims to improve diagnostic consistency and clarify clinical reporting practices.
Prior to and throughout the establishment of IVTSF, our founders engaged in research on vanishing twin syndrome (VTS) through academic institutions and international collaborations. These foundational works inform the research direction and priorities of IVTSF today. The following outputs were completed by IVTSF leadership and continue to shape our evidence-based approach.
This mixed-methods study, led by Dr. Nichole Cubbage in collaboration with Dr. Nicholas Embleton, the creator of the Butterfly Project, integrated survey data from patients with VTS to identify communication gaps, emotional needs, and opportunities to improve miscarriage information and clinical care.
Note** This is the Accepted Manuscript of an article published in Twin Research and Human Genetics by Cambridge University Press on behalf of the International Society for Twin Studies. This version is shared in accordance with the Journal Author Publishing Agreement and Cambridge University Press’s Green Open Access policy, which permits public posting of the Accepted Manuscript on non-commercial websites after an embargo period of six months following publication. The final Version of Record is available via Cambridge University Press at https://doi.org/10.1017/thg.2025.10. This version of the manuscript has not been copy-edited or typeset by the publisher.
Cubbage, N. M., Schilit, S. L. P., Groff, A., Ernst, S., & Nascarella, M. A. (2025). Addressing patient–provider communication gaps in vanishing twin syndrome: Implications for patient care and clinical guidelines. Healthcare, 13(16), 2048. https://doi.org/10.3390/healthcare13162048
The IVTSF Founder, Dr. Nichole Cubbage, DHSc, and IVTSF Board Member, Dr. Allison Groff, MD, FACOG, served as key contributors to this published Healthcare 2025 article. Their combined clinical, scientific, and patient-advocacy expertise shaped one of the first comprehensive peer-reviewed analyses of diagnostic challenges and international guideline needs surrounding VTS.