2 - Network organisation and process
|
Quality
Management |
Training and
Education |
Public
Involvement |
| Description | ||
|---|---|---|
Name |
INFANT - Irish Centre for Fetal and Neonatal Translational Research |
|
| Existence of an identified contact person for external enquiries | Yes | Jackie O’Leary RGN, Diploma in Quality Management, BBUS and Masters in Clinical Trials. Neonatal clinical trials coordinator. e-mail: Jackie.OLeary@ucc.ie is available under the INFANT website and identified as the contact person for enquirers. |
| Existence of an internal steering committee | Yes | Yes there is an internal steering committee within the INFANT structure for paediatric trials. Prof Eugene Dempsey Prof Geraldine Boylan Dr Brendan Murphy Dr Deirdre Murray The Internal Steering Committee is available on the INFANT website along with their specialties. |
| Existence of an external advisory steering committee directing the reporting party | Yes | Yes within the INFANT structure we have established an oversight steering committee that consists of internal and external members. Dr Janet Rennie UCLH Geraldine Keohane Midwife unit manager SIMS IVF-Cork Associate Prof David Smith Royal College of Surgeons Ireland Prof Joe Eustace UCC Director HRB-CRFC Prof Lucy Chappell Kings College London Prof Geraldine Boylan Director of the INFANT Centre Prof Louise Kenny Director of the INFANT Centre Christian Stafford Business Manager INFANT Josephine Studham Head of Operations INFANT Available on the INFANT website. |
| Existence of a website | Yes | |
| Existence of newsletter | Yes | A newsletter is sometimes established depending on the nature and diversity of the research and its colloborators. These are distributed primarily electronically. |
| Existence of internal databases for disease, condition treatment and/or outcome | Yes | Medscinet are an Industry partner in the INFANT Centre and coordinate our research databases. The SCOPE study recruited 3000 first time mothers from early pregnancy. This will be used to develop ways of predicting which mothers are at high risk of pre-eclampsia, pre-term birth and poor fetal growth. The information gathered by the SCOPE study provides a unique platform for us to collect important information about babies as well as their mothers. BASELINE is the first longitudinal Irish birth cohort study. Children were seen at 2, 6, 12, 24 and 60 months and detailed assessments of their diet, general health, growth and development were collected. We have also stored maternal blood samples during pregnancy and samples from the babies’ umbilical cord at birth. We will initially focus on three main research questions: the effects of poor growth in the womb, the incidence and prevalence of food allergy and eczema in early childhood and the incidence and effects of maternal and infant vitamin D status on the growth and health of Irish children. Although we will initially focus on these important areas, the establishment of this birth cohort will offer many opportunities for further research as the children grow older. It will form a unique bio-bank of information from Irish children collected from soon after their conception. Neonatal brain research group (NBRG) has been collecting EEG’s on Preterm and Term neonates since 2003 which include a vast library of seizure EEG’s used to validate ANSeR’s Seizure detection algorithm. The BiHIVE study holds a cohort of approx. 600 cases and controls of babies born with HIE who have cord blood bio banked for biomarker discovery. |
| Provisions to ascertain data protection and data security | Yes | We have a dedicated full time data manager and within each individual research project the participants are only identifiable by their initials and date of birth. |
| Procedures to access the database by third parties | Yes | |
| Access to external databases/registries | Yes | |
| Standardised process to access an external database | Yes |