Research Opportunities

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.

Open studies

Perceptions and support needs of adults born preterm

Jo is a Nurse and phD student at Imperial College London. She is leading this study with our co-founder Lauren’s support to gather views from those born preterm about our health, support needs and experiences with healthcare. And you can also sign up for the second part of the study which will be a one-to-one interview.

Open to adult preemies who live in the UK. Click here to go to the survey sign-up

COLLABORATE

This project aims to resolve the uncertainties around the use of pasteurised human donor milk, preterm formula, and fortifier for extremely preterm babies.

Drs want all babies to receive their own mother’s breastmilk, however, expressing breastmilk can be difficult and stressful, especially when their baby is in a neonatal unit. If there isn’t enough breastmilk, Drs need to supplement the baby’s feeds with either pasteurised (heat-treated) human donor milk or a special preterm formula. Both options have pros and cons, and we don’t yet know which is better as a supplement.

This study is open to parents and adult preemies.

Click to view their website COLLABORATE | Faculty of Medicine | Imperial College London

Please email COLLABORATE@imperial.ac.uk to get involved!

Watch our co-founder Lauren explain a bit more below.

WHEAT trial

Now closed

Adult preemie health study

Michelle Kelly and her team at Villanova University would like to hear about your health and experience with your healthcare team. The survey will take approximately 10 minutes to complete. Participation is voluntary. No identifiable personal information will be collected. No compensation for participation is offered. 

Questions regarding the survey may be emailed to: michelle.kelly@villanova.edu. 

The attitudes of parents and adults who were born preterm, towards the treatment of extremely preterm infants

This survey is for adults born preterm and parents in the UK which involves reading statements about extremely preterm infants and arranging them in order of agreement from ‘disagree’ to ‘agree’ on a grid. It will take around 45 minutes.

Please be aware that some of the statements may be controversial or upsetting. Please get in touch with us or with the researchers conducting the study if needed.

Support after Neonatal Care

This project is being run by the North West Neonatal with their lead psychologist and a NICU mum. It is looking into the support parents need and healthcare service’s understand the ongoing challenges of being born early.

They would welcome adult preemies’ input, as well as their parents.

Follow the QR code to sign up for the questionnaire and/or a focus group.

Chiesi EMPOWER survey

This survey was co-produced with Lauren and Juliette, and is for those born prematurely and living with asthma and/or Chronic Obstructive Pulmonary Disease (COPD).The aim of this survey is to better understand patient’s awareness about preterm status and its influence on respiratory disease development and management.

Talking about the consequences of premature birth in a therapeutic setting

Polly is an adult preemie who is studying for her undergraduate degree in counselling at NESCOT. She is conducting a project looking to explore and gain an understanding of people’s experiences of therapy with regards to their prematurity and the consequences it has had throughout their lives.

Open to preemies in any country who have received or are receiving support from a counsellor.

study exploring close social relationships involving interpersonal touch

Emily Jackson is a PhD student at Liverpool John Moores University. Her thesis study is looking at how close social relationships involving affectionate, typically “comforting” touch are described and experienced by individuals who
were born prematurely. The study aims to understand whether premature birth relates to
developmental, behavioural, psychological, and social-emotional outcomes in adulthood.

Stage 1 involves an online questionnaire, and Stage 2 will be an online interview. The study is only open to preemies in the UK, and there will be a shopping voucher as a thanks for your time.

Early Life Experience & Social Touch

Laura Mulligan is a PhD student from Liverpool John Moores University. Her thesis is examining how early life experiences impact the developing brain. It is investigating if early life experiences affect social interactions as adults. It is online and completely anonymous so please answer as honestly as you can. It is open to all preemies.

Investigating the psychological effects of preterm birth

The study aims to investigate whether preterm birth affects levels of stress, personality and cognitive function. This study is open for anyone over 18 and fluent in English to take part in and will involve completing an online survey consisting of several questionnaires. The first round is an online questionnaire which can be completed on its own, and the second round will involve travel to Lincoln, UK.

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.

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.

Happ-e

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

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.

RECAP

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.

Decision Making

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.

Neurodevelopmental Follow-up

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.

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. 

This page will be updated as new projects come to our attention