Putting you in the heart of the rare community – Stichting TAPS Support
Estimated reading time: 7 minutes
Patient advocacy groups deliver their top three unmet needs and main asks of industry to best serve their rare community. This week’s insights come from Stephanie Ernst, founder (and TAPS Nerd), Stichting TAPS Support
Photo credit: Maurice Jager photography
Our foundation is dedicated to making a positive impact on the world of monochorionic twins, through education, connections and research for doctors, families and policymakers. We challenge outdated guidelines, empower parents to ask questions and advocate for the best care before, during and after a monochorionic twin pregnancy, and work towards creating better outcomes for twins worldwide.
We do this through online community building, with dedicated volunteer community managers, as well as awareness campaigns through social media, targeting parents, professionals and the wider community.
We are also active in research, through participation in research, publications in journals, speaking at conferences and congresses on the parental perspectives in complicated monochorionic twin pregnancies, as well as participation in PPI/PPPAB settings.
Our commitment to evidence based information means we regularly speak with medical professionals and experts in the field on the latest developments, and create a bridge from provider to patient by breaking down walls of jargon.
Twin anemia polycythemia sequence (TAPS), twin-twin transfusion syndrome (TTTS) and selective fetal growth restriction (sFGR) are rare placental diseases affecting twins (and higher order multiples) who share a placenta. TTTS and TAPS are caused by imbalance in the blood flow of the placenta, while SFGR is caused by unequal placental sharing. While these are separate conditions, they can also be co-morbidities in a monochorionic multiple pregnancy. These conditions are under-researched, and often misunderstood and misdiagnosed, meaning that mortality and morbidity rates are high within our community.
What are your top three unmet needs or main asks of industry to best serve your rare ecosystem?
Progress in monochorionic twin care is being held back by one core issue: the absence of large scale, connected data. Clinicians are still managing serious conditions such as TTTS, TAPS and sFGR using small, isolated studies, with no shared system to track outcomes over time. Without longitudinal data, advancing treatment strategies remains slow and uncertain.
An industry partnership can address this by building a standardised management platform supported by a global registry. A primary objective is the generation of real world evidence for post market surveillance. Regulators expect manufacturers to demonstrate that devices such as lasers, fetoscopes and ultrasound systems remain safe and effective well beyond initial approval. Embedding a registry directly into the clinical workflow enables continuous, low burden data collection in real time. Instead of relying on expensive standalone trials, partners gain direct visibility into device performance across a broad patient population, creating a stronger foundation for ongoing improvement and more targeted development of next generation tools.
Long term follow up is another critical gap. Fetal care teams often lose contact with patients after discharge, leaving outcomes in early childhood largely unknown. A connected platform can extend beyond the fetal centre, linking care to paediatric follow up and enabling the capture of neurodevelopmental milestones and imaging results over time. This allows partners to demonstrate value based care by connecting prenatal intervention to measurable outcomes later in childhood.
A global registry also enables the creation of trial ready cohorts. Recruiting patients for rare conditions is often slow and resource intensive. A structured, searchable population reduces these barriers and allows studies to begin more efficiently, supporting faster evaluation of new therapies for conditions such as preterm labour and placental insufficiency. With this infrastructure in place, industry can bring greater consistency and clarity to how outcomes are measured and improved. This is an opportunity to convert disconnected clinical experience into a scalable evidence base that supports reliable, high quality results for every pregnancy.
The current approach to monochorionic twin care is marked by inconsistent data and uneven practices, where the quality of care can vary based on location rather than clinical need. Some centres follow rigorous protocols, while others lack regular screening or rely on outdated diagnostic methods. This variation reflects fragmented data systems and the absence of standardised tools, making a unified management platform an essential step forward for the field.
A key challenge is the continued reliance on consensus based staging rather than robust, evidence based metrics. Common criteria can miss a meaningful proportion of cases because they depend on thresholds that no longer reflect current understanding. Industry partners are well placed to address this by embedding validated, evidence based parameters and additional ultrasound markers directly into clinical software. This reduces the need for manual calculation and supports more consistent diagnostic accuracy across centres.
Standardising the screening interface would help ensure that all patients receive a consistent level of care, regardless of where they are treated. It creates a shared clinical workflow, replacing fragmented approaches with a more coordinated and reliable system. With integrated real time staging and decision support, an industry led platform can help make appropriate screening the norm rather than the exception. This approach moves the field from a fragmented model to a more structured, data driven environment where high standards of care are widely accessible. With the ability to deploy solutions across multiple centres, industry has a unique role in supporting greater equity than individual institutions can achieve alone. This is an opportunity to lead the transition toward a more connected, data rich ecosystem that supports consistent, high quality outcomes for every pregnancy.
Fetal medicine is currently constrained by the limitations of tools that were never designed for its unique challenges. Complex monochorionic complications are still being treated with equipment adapted from adult laparoscopy, and this approach is no longer sufficient. From a patient perspective, our third and most urgent request is clear: industry must move beyond repurposed technology and invest in precision hardware developed specifically for the fetal environment.
Conditions such as TAPS are driven by extremely small placental vascular connections, often less than 1 mm in diameter, which can be difficult to detect and treat using standard equipment during laser surgery. There is a clear need for high definition, microsurgical fetoscopes and laser fibers that enable surgeons to reliably identify and seal these vessels with complete confidence. Addressing these residual connections would significantly reduce the risk of iatrogenic TAPS and help preserve critical placental function for twins affected by sFGR.
At the same time, innovation must be accessible. Advances that remain limited to a small number of well resourced centres will not meaningfully improve global outcomes. A child’s chance of survival should not be determined by geography. Industry should prioritise the development of cost effective, durable technologies that can be implemented in low and middle income countries, alongside investment in remote mentorship and simulation based training to support safe and effective adoption. By closing the gap between technological advancement and global accessibility, the field can move beyond fragmented practices toward a more consistent, evidence based standard of care. This is an opportunity for industry partners to lead meaningful progress by aligning innovation with the specific needs of fetal patients while ensuring equitable access worldwide.
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