GenOMICC is conceived as an open-source research study, so that any clinical investigator, anywhere, can set up their own version of the study. To begin recruitment you need to have ethical approval and approval from your institutional management.
The GenOMICC team can help you to obtain these approvals. Please check the map on the front page to see if recruitment is already underway near to you - you might be able to save time and energy by collaborating with someone in a nearby institution or country.
If you have a baby born <32 weeks GA who is in the NICU then please consider recruiting them to the GenOMICC study. Genetics could make a big difference in our understanding of diseases of prematurity such as Bronchopulmonary Dysplasia (BPD) and Necrotising Enterocolitis (NEC).
Bronchopulmonary dysplasia is more commonly observed in extremely preterm infants born 21-28 weeks GA where prevalence is around 46%, compared to very pre-term infants born between 28-31 weeks GA where prevalence is around 30%.
To maximise the probability of identifying host genetic loci associated with diseases od prematurity we aim to recruit any infant born <32 weeks GA who enters critical care in the UK.
Recruitment will occur prior to the development of the phenotype. BPD will be defined as a requirement for respiratory support at 36 weeks:NNAP audit measure.
All babies will be treated according to clinical requirements regardless of their participation in the study. Provision of care will vary by site and by treating physician.
Babies will be recruited who:
Recruitment is designed to be as straightforward as possible involving consent, a single sample and completion of a short case report form.
Whilst early sampling is desirable, there is no time limit for recruitment. Multiple sample options are possible and the central GenOMICC study team can supply specimen kits and all their component parts.
You can either perform genome sequencing locally, or share the samples with the GenOMICC study team in Edinburgh, and we will arrange to do it.
Our study documents and consent forms can be found here: Study Documents
One of the following sample types should be obtained:
Whole blood in EDTA tube – preferred option in all cases: 0.5-4kg: 0.5mls (1ml/kg)
Umbilical cord blood in an EDTA tube: 1ml
Dried blood spots: >0.5kg: 4 spots (0.5mls, 1ml/kg)
How are invasive and non-invasive ventilation defined for the study?
Can a participant donate a blood sample following a blood transfusion?
Investigators can share and access data through the Outbreak Data Analysis Platform.
