CSAR/Research4Babies joined the Tiny Baby Collaborative: Multicenter Inventory of Neonatal-Perinatal Interventions (MINI)
Each year, a small but growing number of infants are born at the very limits of viability — just 22 to 23 weeks’ gestation. These tiny babies weigh little more than 400–500 grams and face an extraordinary journey of survival. While advances in neonatal and perinatal care have made it possible for more of these infants to survive, their care remains one of the most complex and controversial challenges in modern medicine.
A Collaborative Effort to Understand and Improve Care
The Tiny Baby Collaborative Multicenter Inventory of Neonatal-Perinatal Interventions (MINI) aims to change that. The MINI project is a multicenter registry designed to capture real-world data on all deliveries and neonatal intensive care admissions of infants born at 22–23 weeks’ gestation across participating hospitals.
By pooling data from multiple centers, the MINI registry will provide the first comprehensive picture of how perinatal practices and outcomes vary across institutions — and, crucially, how certain approaches may lead to better survival and neurodevelopmental outcomes.
Why This Matters
Although births at 21–23 weeks’ gestation account for only about 1 in 1,000 live births, they represent nearly 1 in 7 infant deaths in the first year of life. Care for these infants varies dramatically between hospitals and countries, with some offering full resuscitative care while others provide only comfort measures.
From 2014 to 2019, active treatment for infants born alive at 22 weeks more than doubled in the United States — from 26% to 58% — and more than 1,000 babies at 22–23 weeks now survive beyond one year of life annually. Yet evidence to guide care remains limited. Most research lumps these infants together with those born up to 27 weeks, masking important differences in physiology, risk, and response to treatment.
The MINI registry addresses this knowledge gap, offering a unique opportunity to study real-world interventions at the threshold of viability.
Objectives of the MINI Registry
The MINI minimum dataset will:
Collect detailed information on perinatal practices and outcomes for all 22–23-week infants admitted to NICUs or transferred within 48 hours of delivery.
Allow comparisons between hospitals to identify potentially better practices that result in improved survival or reduced morbidity.
Enable quality improvement through real-time feedback on local practices.
Support focused analyses on specific aspects of care, such as incubator humidity, fluid management, and nutrition during the critical first two weeks of life.
Ultimately, MINI will help clinicians and researchers understand which practices work best — and how to optimize care for both mother and infant during these fragile early days.
Data Collection and Governance
Each participating hospital will collect data from medical records using a standardized form hosted in a secure REDCap database managed by Nationwide Children’s Hospital.
All data are anonymized and assigned a unique study ID.
Each hospital retains access to its own data while contributing to the shared dataset.
Strict data security and privacy measures are in place to protect patient information, in compliance with local and national regulations.
Any research proposals using MINI data will undergo review and approval by the Tiny Baby Collaborative Steering Committee to ensure ethical use and scientific rigor.
Building a Foundation for the Future
Infants born at 22–23 weeks exist in a “gray zone” of viability — a space where medicine, ethics, and compassion intersect. The MINI registry represents a major step toward clarifying what works, where gaps exist, and how we can do better.
By uniting centers across regions and countries, the Tiny Baby Collaborative is not only building a database — it’s building a community committed to improving outcomes for our tiniest and most vulnerable patients.
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