The UAB to sign agreement to share data on mother-child research conducted at Sant Pau Hospital

Research on pregnant women, children and infants represents a major challenge for science, as the safety requirements and study criteria are particularly strict, which often becomes an obstacle to obtaining new results based on scientific evidence that allow advances to be made and offer solutions that improve clinical practice in these population groups.

Although these cooperation networks have been in existence for some years, this situation could take a major leap forward thanks to the renewal and innovation that this new network will bring in a framework agreement signed by 18 Spanish hospitals under the auspices of the Maternal and Child Health and Development Network (SAMID) of the programme of Networks of Cooperative Research oriented to Health Results (RICORS), coordinated by UAB lecturer Elisa Llurba, main researcher of the Perinatal and Women's Medicine Group of the Research Institute of the Hospital de la Santa Creu i Sant Pau - IIB Sant Pau and director of the Gynaecology and Obstetrics Service of that same hospital.

This RICORS-SAMID maternal and child consortium, created in 2008 and renewed in 2021 with the support of the Carlos III Health Institute of the Spanish Ministry for Health, is made up of a total of 20 research groups and 27 associated clinical groups from different Spanish health centres, which means the participation of more than 300 researchers, including doctors specialising in neonatology, paediatrics and obstetrics, primary care paediatricians, biologists, anthropologists, perinatal mental health specialists, midwives, nurses, primary care and paediatric intensive care unit (PICU) nurses, nutritionists, educators, graphic designers and physical education professionals, among others, who join forces to promote a comprehensive and collaborative plan that encompasses hospitals and primary healthcare centres to improve the health of women, mothers and babies.

With this new framework agreement, the centres that form part of the RICORS-SAMID network will share research objectives and projects, as well as clinical data, images and samples, which will make it possible to generate the largest information bank in Spain. This will facilitate large-scale clinical trials, innovation-based studies such as big data and artificial intelligence, and will contribute to leadership in this field at the European level.

According to Dr Llurba, "the agreement signed within the framework of the RICOR-SAMID Network is a decisive step towards promoting research through collaborative work in the area of maternal and child health, which will also make it possible to attract talent and access competitive public and private funding".

The coordinator of the RICORS-SAMID network goes on to explain that with this agreement: "We have achieved a legal framework that not only aims to facilitate research between the different groups, but also aims to become an instrument for announcing advances so that the users themselves and society in general can take a more active role in the process. To this end, an open mailbox has been set up where citizens can explain their needs and become involved in the research process through a process of co-creation and incubation of ideas".

The health consortium incorporates the perspective of medical and health anthropology through the AFIN research group of the Universitat Autònoma de Barcelona. Its director, Dr. Diana Marre, believes that "this agreement, which includes qualitative social research in the hospital setting, is an unprecedented opportunity to increase personalised maternal and child care and shared decision-making that takes into account family, ethnic and gender diversity".

Projects with Impact

One example of the projects being developed in the framework of the RICORS-SAMID network is a study assessing neurodevelopment in neonates affected by congenital heart disease. Samples from both mothers and newborns are being analysed, in addition to prenatal MRI and ultrasound images, as well as data from follow-ups in the first years of life. The aim is to look for neonatal and postnatal predictors associated with neurological development and quality of life in these children.

"Congenital heart disease is a relatively rare type of congenital malformation, but its impact on health is important and we need a lot of data that can be translated into clinical responses and really improve the health of these children on a day-to-day basis," says Dr Llurba.

In addition, other projects are underway that are studying, for example, prognostic and diagnostic markers of pre-eclampsia and prematurity; intrauterine growth restriction and its long-term consequences; the effects of environmental pollution and prenatal exposure to substances of abuse on maternal and child health; early reproductive losses and their impact on mental health; renal involvement in mothers with pre-eclampsia; how to improve diagnosis of early gestational diabetes in the first trimester of pregnancy and its effect on infant neurodevelopment; nutrition and its effects on childhood obesity; biomarkers of neonatal circulatory failure; treatment of bacterial sepsis in neonates; resuscitation of premature infants; treatment of complications of neonatal hypoxic-ischaemic encephalopathy; hypoxic-ischaemic brain injury; and diabetes and the experience of families and patients, as well as their needs and expectations.

The network is also developing projects on health education, the promotion of healthy habits at all ages, the prevention of sudden death and the after-effects of cardiorespiratory arrest through training actions aimed at professionals and citizens, as well as research into clinical and ethical aspects of paediatric palliative care.

The following is a list of hospitals and research institutes who signed the agreement:

• Institut de Recerca de l'Hospital de la Santa Creu i Sant Pau – IIB Sant Pau
• Institut de Recerca Biosanitària (IMIB) – Fundació per a la Formació i Recerca Sanitàries de la Regió de Múrcia (FFIS)
• Institut de Recerca Sanitària La Fe - Fundació per a la Investigació de l'Hospital Universitari La Fe de la Comunitat Valenciana
• Institut de Recerca Hospital 12 d'Octubre – Fundació Investigació Biomèdica Hospital Universitari 12 d'Octubre
• Institut de Recerca Sant Joan de Déu (IRSJD) – Fundació Privada per a la Recerca i la Docència Sant Joan de Déu
• Institut Biocruces Bizkaia - Associació Institut de Recerca Sanitària Biocruces Bizkaia
• Grup de recerca AFIN – Universitat Autònoma de Barcelona (UAB)
• Institut de Recerca Sanitària de l'Hospital Universitari La Paz (IdiPAZ) - Fundació per a la Recerca Biomèdica de l'Hospital Universitari La Paz
• Institut d’Investigacions Biomèdiques August Pi I Sunyer (IDIBAPS) – Fundació Clínic per a la Recerca Biomèdica
• Institut de Recerca Sanitària Gregorio Marañón - Fundació per a la Recerca Biomèdica de l'Hospital Gregorio Marañón
• Institut de Recerca Biosanitària de Granada (ibs.GRANADA) – Fundació Pública Andalusa per a la Investigació Biosanitària d'Andalusia Oriental – Alejandro Otero
• Institut de Recerca Sanitària Aragó - Fundació Institut de Recerca Sanitària Aragó
• Institut de Recerca Sanitària Hospital Clínic San Carlos - Fundació per a la Recerca Biomèdica de l'Hospital Clínic San Carlos
• Institut de Recerca Sanitària Valdecilla (IDIVAL) – Fundació Institut de Recerca Marquès de Valdecilla
• Institut de Recerca Sanitària de Santiago de Compostel·la – Fundació Institut de Recerca Sanitària de Santiago de Compostel·la
• Fundació Puigvert
• Institut de Recerca Sanitària del Principat d'Astúries – Fundació per a la Investigació i la Innovació Biosanitària del Principat d'Astúries