Research has always been a core aspect of premature birth. Many adults born prematurely will have participated in research during their stay in NICU, or during childhood; however, long-term research is often sparse. It is clear that these studies are often expensive and time-consuming; many taking years, or decades to complete.
As the number of babies born prematurely has increased, there is a growing interest in the long-term impact of premature birth. As adult preemies, our outcomes and experiences are still of interest to researchers and can help shape and improve the understanding of our own health risks, and also the future for today’s premature babies.
Below you will find a list of current research opportunities for adults born prematurely.
If you are a researcher and would like your work listed please get in touch.
Funded by EFCNI’s RECAP preterm project, this research aims to understand the Health of Adult People born Preterm, through the use of an E-Cohort, (HAPP-e) via online questionnaires.
The questionnaire is available in English, German, French, Italian, Portuguese and Spanish.
NeoWonder is a UK research project looking to link existing Neonatal, Health, Educational and other records to improve the long-term outcomes of those born prematurely. The research is open to UK residents only with both parents and preterm adults welcome.
This study is a Europe-based Core Minimum dataset consensus study. It aims to develop recommendations for a Core Minimum Dataset for future preterm birth cohort studies as part of the European RECAP preterm project. It aims to improve the health, development and quality of life of very preterm or very low birth weight children and adults.
Values and preferences
This study based in Canada is looking for the values and preferences of adults born preterm and parents on the use of medications at birth as a prophylactic for conditions such as PDA/Patent Ductus Arterosus within the heart.
The research team at Indiana University want to know how parents make decisions during pregnancy and when facing an extremely early delivery.
At the moment this study is aimed at parents but we feel a wide variety of research can be valuable.
The British Association for Neonatal Neurodevelopmental Follow-up (BANNFU) is a special interest group in the UK focussing on the development and follow-up of preterm babies and their journey through childhood and into adulthood. Ben currently sits on the group as a representative for ex-preterm adults, but they are looking to form a dedicated ex-patient / ‘neonatal graduate’ group where young adults and adults who were born preterm who live in the UK can share their experiences and perspectives with the group to help shape and improve developmental care and research for preterm babies.
If you’re interested in being involved please get in touch with Ben at firstname.lastname@example.org
Defining what matters after NEC
The team at the University of Groningen in the Netherlands are looking to involve ex-prems, parents and relatives who were affected by necrotizing enterocolitis (NEC) to share their voices on what matters after NEC. Get involved via the link below, and feel free to share with your parents or relatives.
The first round has now closed, we are awaiting the second round
Early preterm birth research priorities
The International Perinatal Research Partnership (INPRES) is conducting a research study looking to hear from adults born preterm (amongst others) about the priority questions for research around babies born before 25 weeks gestation. It is open to those who live in the UK and Australia.
The initial survey closes on 28th February
This page will be updated as new projects come to our attention