The HAPP-e project

The HAPP-e project in a nutshell

HAPP-e is the acronym for “Health of Adult People born Preterm – an e-cohort pilot study”. We are inviting adults with a history of preterm birth to be part of an innovative way of doing research.

Our objective?

To study the health of adults born preterm at a large scale, using digital tools.

For that, we want to recruit and follow up a cohort of adults born preterm. A cohort is a group of participants who share a characteristic (e.g. being born preterm) and is followed over time, to describe and understand the evolution of their health and their life conditions. Participants are usually recruited in a healthcare facility (a hospital for instance), and regularly provide information through medical examinations, paper-questionnaires, face-to-face or telephone interviews.

With this project, we want to go beyond usual cohorts and set up an electronic cohort, or e-cohort, with both recruitment and follow-up of participants over time entirely performed using digital tools, such as a web-platform. An e-cohort takes advantage of current technologies and methods of communication to reach diverse, geographically dispersed and specifically targeted populations. It is less expensive than traditional cohort studies and allows for large-scales studies. Last but not least, it is convenient for the participants, no need to move from home!

E-cohorts are a promising method to improve the health and conditions of life of adults born preterm, by expanding scientific knowledge. However, to our knowledge, this is the first time that such a project is implemented to study the consequences of preterm birth. As the first part of the project, we are releasing our questionnaire in English, French, German, Italian, Portuguese and Spanish to analyse data collection methods and refine survey tool to better adjust our metholology for the second phase. We expect to release the questionnaire in more languages and reach a higher number of participants, as well as extend our project and research to parents of preterm babies.

Participating in HAPP-e is giving a little bit of your time to help improving knowledge about the condition of adults born preterm. By answering on-line questionnaires, sharing your experience and testimonials, you can become fully involved in medical research. You will contribute to the publication of scientific results that will improve the health of tomorrow. A real citizen approach to improve public health!

Our research questions and objectives

The overall objective of this first phase of the project is to implement a pilot study to assess the feasibility of recruiting and following up an e-cohort of adults born preterm, with regular data collection. In other words, we want to know if it is possible to study the health of adults born preterm at a large scale, with innovative digital tools.

The specific objectives are:

To assess the feasibility of methods and procedures for recruiting an open e-cohort based on voluntary participation;
- Did we design a good project? Did we think about everything?
To provide estimations of participation, characteristics of participants and quality of data collected;
- Are people willing to participate? Who are they?
To compare these data with previously published data describing adults included in traditional cohorts or data from cohorts participating in the RECAP-preterm consortium.
- Are the HAPP-e participants similar to those included in traditional studies?

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Personal data

What data are collected?

HAPP-e is not designed to answer a specific and unique question but to answer a large number of research questions. The first questionnaire will address the following topics:

Circumstances and conditions of birth and past health condition
Socio-demographic data (e.g. year of birth, gender, marital status), education and employment
Health data and biometrics
Quality of life, mental health, autism, anxiety, personality and depression
Lifestyle factors (smoking, alcohol and drug use), sleep and physical activity.

Moreover, contact details (email) will be collected to allow the follow-up of the cohort.

What will happen next with my data?

All connections with the HAPP-e platform are secured and encrypted. Your data will be exported to a study central database using secured connections, and will be securely stored in an infrastructure that includes regular back-ups and has controlled access. Your answers to the questions will be kept for 15 years. Each participant will receive a unique random ID, which will be used to transmit data to ISPUP and for analysis purposes.

Contact data (email) will be kept in a secured separate database, separately from answers to questionnaires. Your contact data will be kept for 5 years, unless you agree to participate in a longer follow-up study.

Access to personal data is only allowed to managers and researchers in charge of the study who are authorized to use this information and only for the duration of the research. Your data will not be linked to any other personal data which you might have published yourself previously or to any hospital data. They will never be shared with private for-profit groups such as drug industry or insurance companies.

Will data be published?

Yes, publications in scientific journals are important to share findings with the scientific community and help science moving forward. Of course, only aggregated statistical results of this pilot study will be published in scientific journals and those results will be fully anonymous.

Laws and regulations

Your personal data will be collected, processed and analyzed in a proper and careful manner in accordance with Europe’s data privacy and security law, the GDPR (General Data Protection Regulation, Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC), and any other applicable legislation relating to the processing of personal data.

The survey is organised by the Institute of Public Health of the University of Porto (ISPUP, Portugal). In a legal sense, ISPUP is the controller of the personal data you will enter via the survey. ISPUP does not collect the data itself. ISPUP has delegated that task to another partner of the project which is INESC TEC (Institute for Systems and Computer Engineering, Technology and Science, Portugal) also located in Porto. INESC TEC offers a secure research platform where data can be safely collected and analysed without negative consequences for you or your privacy. In legal terms, INESC TEC is the personal data processor.

The project has been validated by our data protection officer and approved by the ISPUP Ethics Committee on the 25th of July 2019 (CE19124).

Your privacy is our utmost concern. With the HAPP-e web-platform, all conditions of confidentiality and computer and physical security of your data are ensured. No data will be collected without your consent, that’s why we ask you to sign a consent form before filling the questionnaire. All data are secured and encrypted. Access to personal data is only allowed to managers and researchers in charge of the study who are authorized to use this information and only for the duration of the research. Contact data are kept at INESC-TEC, separately from answers to questionnaires. Each participant will receive a unique random ID, which will be used to transmit data to ISPUP and for analysis purposes. Moreover, your answers will not be linked to any other personal data which you might have published yourself previously or to any hospital data.

Your contact data (email) will be kept for 5 years, unless you agree to participate in a longer follow-up study. The answers to the questions will be kept for 15 years. You have the right to:

Request a copy of your answers.
Request to have your data sent to another controller at your choice (right to data portability). In such a case the data will also be deleted, unless it has already been used in a scientific study. In that case only your contact data will be deleted.
Request to delete your data, unless they have been used in a scientific study already. In that case only your contact data will be deleted.

These requests should be addressed directly to the data controller, ISPUP, using the following email: happe@ispup.up.pt

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Funding

This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 733280.

How does it work?

The HAPP-e keywords

Easy

Simple questions about your daily life, your health and your feelings.

Observational

No intervention, No examination, Only questions. No need to move from home.

Quick

Participating will take you between 30 minutes and 1 hour, once a year.

On-line

Enrollment and data collection are performed through a dedicated and secured web-platform.

Accessible

You only need an internet connection and a few clicks to participate. Someone can help you if you experience any difficulty.

Secured

Your data is protected, anonymized and used for public health research purposes only.

Multi-languages

For now, the questionnaires are available in English, French, Italian, German, Portuguese and Spanish.

The RECAP-preterm project

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Research on European Children and Adults born Preterm

Very preterm (born before 32 weeks of gestation) or very low birth weight (with a birthweight less than 1500g) births account for up to half of perinatal and infant deaths, children with impairments and disabilities and more than a third of the health and educational budgets for children across Europe.

The overall aim of the RECAP-preterm Project is to improve the health, development and quality of life of these children and adults born preterm by developing the RECAP-preterm Cohort Platform, a digital, sustainable, geographically diverse and multidisciplinary database of European cohorts of individuals born very preterm. A cohort is a group of participants who share a characteristic (e.g. being born preterm) and is followed over time, to describe and understand the evolution of their health and their life conditions. The RECAP-preterm network contains cohorts constituted over a 30-year time span and is designed to optimize the use of population data for research and innovation in healthcare, social and education policy. We are also developing novel methodologies and tools for data management and analysis to strengthen research on current and future cohorts.

This broadened data basis shall ensure improved understanding, diagnosis and evidence-based, personalized prevention of mental and somatic disorders that are associated with preterm birth. The establishment of this collaborative European platform, implemented by a consortium of multidisciplinary experts, enables us to take current knowledge, research methods and tools as well as translation into practice beyond the current state of the art. This will benefit babies, children, and adults born preterm, their families and society.

RECAP website

Being born preterm

Preterm birth and consequences at adult age

Definition of preterm birth

The length of a normal pregnancy is around 40-41 weeks from the first day of the last menstruation. A baby is considered born preterm when born before 37 weeks, i.e. before the beginning of the 9th month of pregnancy.

Adults born preterm

The first infants who benefited from improved care are now adults, entering middle age. With prematurity and survival rates both increasing, these “adults born preterm” represent a growing share of the population. It has been shown that most children born very preterm adjust remarkably well during their transition into adulthood. In a recent review of 126 publications, Raju et al. report that “an overwhelming majority of adults born at preterm gestations remain healthy and well”^[1]. However, they acknowledge that “a small, but a significant fraction of them remain at higher risk for neurological, personality and behavioral abnormalities, cardio-pulmonary functional limitations, systemic hypertension and metabolic syndrome compared to their term-born counterparts. The magnitude of increased risk differed across organ systems and varied across reports. The risks were proportional to the degree of prematurity at birth.”^[2]

It is thus fundamental to know more about the consequences of preterm birth at adult age, to investigate factors associated with good outcomes and the possible interventions to offer to those who may benefit from these.

[1] Raju TNK, Buist AS, Blaisdell CJ, Moxey-Mims M, Saigal S. Adults born preterm: a review of general health and system-specific outcomes. Acta Paediatr. 2017 Sep;106(9):1409-1437. doi: 10.1111/apa.13880. Epub 2017 May 17. Review.

[2] Global, regional, and national estimates of levels of preterm birth in 2014: a systematic review and modelling analysis. Chawanpaiboon S, Vogel JP, Moller AB, Lumbiganon P, Petzold M, Hogan D, Landoulsi S, Jampathong N, Kongwattanakul K, Laopaiboon M, Lewis C, Rattanakanokchai S, Teng DN, Thinkhamrop J, Watananirun K, Zhang J, Zhou W, Gülmezoglu AM. Lancet Glob Health. 2019 Jan;7(1):e37-e46. doi: 10.1016/S2214-109X(18)30451-0

Famous people born preterm

Sir Isaac Newton

One of the world’s most famous and influential scientists, Sir Isaac Newtown was born on Christmas day 1642. He weighed just 3 pounds at birth [i.e. 1360 g], and his mother said he was so small that he would fit inside a quart mug. He was not expected to live beyond a few hours. Not only did he survive, but he formulated the laws of motion and gravity which is the force that causes things to fall down.

Sir Winston Churchill

Although he wasn’t due to be born until January of the following year, Sir Winston Churchill was born on November 30, 1874. Churchill went on to become Prime Minister of the United Kingdom, a gifted military leader, and a recipient of the Nobel Prize for Literature.

Albert Einstein

Physicist and Nobel Prize Winner in 1921, he was born early in Ulm, Germany in March 1879. Albert Einstein contributed more than any other scientist to the 20th-century vision of physical reality. At his birth, Albert’s mother was reputedly frightened that her infant’s head was so large and oddly shaped. His parents also worried about his intellectual development as a child due to his initial language delay and his lack of fluency until the age of nine, though he was one of the top students in his elementary school and then progressed rapidly from there.

Anna Pavlova

Born prematurely in 1885, Anna Pavlova became one of the world’s most famous ballerinas. Her small size and stature, likely a result of her premature birth, set her apart from other ballerinas of the time. Her influence on the craft continues to be taught to dance students today.

Pablo Picasso

Pablo Picasso was a Spanish painter, sculptor, and graphic artist. He was born in 1881 and lived 92 years. He was one of the most productive and revolutionary artists in the history of Western painting. As the central figure in developing cubism (an artistic style where recognizable objects are fragmented to show all sides of an object at the same time), he established the basis for abstract art (art having little or no pictorial representation).

Victor Hugo

The great French novelist was born prematurely in 1802 and beat the odds in a time where medical terminology was not in favor of early infants. His mother described him as “no longer than a knife” and he could still not hold his head up at 15 months of age. Victor Hugo was most famous for creating the wildly successful ‘Les Misérables’, and for being a political personality and a committed intellectual with a major ideological role and a prominent place in the history of French literature in the nineteenth century, in various genres and fields.

Stevie Wonder

Famous American singer Stevie Wonder was born at 34 weeks’ gestation in 1950. He is blind due to retinopathy of prematurity, a complication occurring when the blood vessels in the back of the eyes are not fully developed and detach from the retinas. While it would be a challenge for anyone to be blind from birth, Wonder became a child prodigy and hugely successful musician, with his dark sunglasses being a signature part of his look as a professional musician. Through research in the years since, the incidence of vision issues is now greatly reduced.

Wilma Rudolph

Wilma Rudolph was born prematurely at 4.5 pounds (2.0 kg) in 1940. Despite having lost strength in her left leg and foot after contracting infantile paralysis caused by the polio virus, Wilma Rudolph became an athlete and was considered the fastest woman in the world in the 60′s, winning 3 gold medals during the Rome Olympic Games in 1960. She became a role model for black and female athletes and her Olympic successes helped elevate women's track and field in the United States. Rudolph is also regarded as a civil rights and women's rights pioneer.

Winning is great, sure, but if you are really going to do something in life, the secret is learning how to lose. Nobody goes undefeated all the time. If you can pick up after a crushing defeat, and go on to win again, you are going to be a champion someday.

—Wilma Rudolph

Our team

The RECAP-preterm consortium

RECAP-preterm brings together European child to adult cohorts and a group of highly experienced organizations. The expertise of the partners covers a wide and complementary range of fields, including life course epidemiology, methodology, neonatology, paediatrics, early-life stressors, non-communicable disease research, epigenomics, economics, psychology, and mental health as well as e-learning technologies, eHealth/mHealth applications, communication, dissemination and project management.

Go to RECAP-preterm website

ISPUP

The Institute of Public Health of the University of Porto (ISPUP) is a research and training institution that aims to create and disseminate high-quality information and knowledge in the broad field of Public Health, with special emphasis on epidemiology, population metrics and nutrition. ISPUP launched the first hospital epidemiology unit in the country, has a large experience regarding the recruitment and the follow-up of cohorts, fosters cooperation with other regional, national and international academic and health institutions, and is one of the most productive and competitive Portuguese institutions in health sciences research.

INESC TEC

INESC TEC is an Associate Laboratory with 30 years of experience in Research & Development and technology transfer. It is a private non-profit research institution with the following associates: University of Porto, INESC and the Polytechnic Institute of Porto. Having around 750 researchers (300 PhD), which work in the interface between the academic world and the industrial and service companies, as well as the public administration, the activity at INESC TEC runs under the paradigm of the knowledge to value production chain: knowledge and results generated at fundamental research are typically injected in technology transfer projects and therefore receive additional social relevance.