It is called “HAPP-e: Health of Adult People born Preterm – an e-cohort pilot study” and was launched by ISPUP. The aim? To study worldwide health and quality of life of adults born preterm, i.e. before the 37th week of gestation, using digital tools.
Adults with a history of preterm birth represent a growing share of the population today. Evidence shows that the majority of preterm infants adapt extremely well during the transition to adult life. However, a significant part remains at higher risk for neurologic, behavioural and personality disorders, as well as metabolic and cardiovascular problems, when compared with term-born adults.
Considering the impact of prematurity on subsequent health, it is crucial to further investigate its consequences. The HAPP-e cohort, a cohort is a group of participants who share a characteristic and is followed over time, to better understand the evolution of their health, is born out of this necessity.
This is the first project whose recruitment is made online aiming to study health consequences of preterm birth. Worldwide, there are several cohorts of adults born preterm, however none has been recruited this way, based on the general population. HAPP-e is an e-cohort, i.e. an electronic cohort, whose recruitment and follow-up of participants throughout the project are performed using digital tools, such as web platforms. “, says Henrique Barros, principal investigator of the project and president of ISPUP.
The decision to launch an e-cohort is based on the fact that this design “allows to reach diverse, geographically dispersed targeted populations, potentially more representative, or hard-to-reach groups, is less expensive than traditional cohorts and allows for large-scale studies. Furthermore, this data collection method is more advantageous for the participants, as they can participate without leaving their homes. Despite being an online cohort, all measures were taken to guarantee confidentiality, privacy and data protection”, he adds.
The cohort, whose platform was launched, is now recruiting participants. All adults (older than 18 years old), who were born preterm, are invited to participate in the study, by filling an online questionnaire, available on the platform.
“Participants’ adherence is fundamental to improve our knowledge on the condition of adults born preterm. With this project, we aim at contributing towards the publication of scientific evidence to improve the participants’ health and guiding future public health policies”, emphasizes Henrique Barros.
At this stage, given the global aspect of the project, the questionnaire is available in Portuguese, English, French and German. Several communication actions are scheduled to disseminate the project and recruit participants worldwide.
Besides ISPUP, HAPP-e was developed by INESC TEC – Institute for Systems and Computer Engineering, Technology and Science, responsible of the web platform development, and benefits from the contribution of the European project “Horizon 2020 RECAP-preterm” investigators.
This e-cohort is part of the project RECAP-Preterm (Research on European Children and Adults born Preterm), that aims to improve health, development and quality of life of European children and adults born preterm.
This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 733280.
