If you are a paediatrician with a new patient that is eligible to participate in EPIPEG, we kindly ask you for following actions:
1. Inform the family of the study and take verbal consent to forward their contact details to the study team
You may wish to hand over the EPIPEG Information Sheet as well as the EPIPEG Consent Form so that parents can take their time to read through the paperwork at home before we get in touch them. We will still explain the study aims and procedure once over the phone and will go through the information sheet and consent form in detail when we see them. Also, we will take informed consent at the first visit.
If families are not consenting, please do still register the baby onto the database. All information will be anonymised automatically and can only be assessed by yourself. However, as EPIPEG is an epidemiological study, it is crucial that we are aware that there has been a case even though we are not able to see the associated data.
2. Register the new patient
Please, register new patients on the ORION database or get in touch with us. We put a lot of time and effort into the design of the database to make it as easy and quick as possible for health professionals to register patients and the whole process only takes a few minutes.
Here is a link to a page that describes the process to register a new patient onto ORION in detail.
Should you need further assistance with the database, please call 01223 941920 or write to support@orioncloud.org.
3. Update any changes in the interim
Every time to are in touch with the family, we would be very grateful, if you could update us on any changes regarding medication, seizure type / frequency etc. Please do this either by
- logging into the ORION database and filling in a short form (this procedure is described here)
- OR forward the clinic letter to Prof Helen Cross (helen.cross@gosh.nhs.uk).
General interest in the study
The EPIPEG project is looking for Health Professionals to collaborate with. If you are interested in learning more about the study, please don’t hesitate to get in touch.