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Epi25 / epi25-edc

CRF design for Epi25 collaborative
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Age at first seizure #5

Closed BrigidRegan closed 8 years ago

BrigidRegan commented 9 years ago

Roland: We need to capture the fact that the information is missing or unknown or that seizures are ongoing. Despite what I said yesterday I think it’s most sound to enter the very age at the last seizure and not distinguish ongoing seizures from those that were stopped. ILAE definition for remissions state a period of seizure freedom of 12 months, so entering age should capture this.There is only a discrepancy if the seizure frequency is high and change in medication or development in the observation period is relatively close to the time of data entry, e.g. a CAE responding well to Ethosuxmide and one can assume that the treatment is successful in the long run - but for a pharmacogenomics study we would need to capture dosage, etc and it’s quite clear that we don’t want to (or can’t) do that for this study.

rolandkrause commented 9 years ago

Need to be clarified. I also wonder whether we could simply leave the empty field as "unknown". I would not know how to treat the empty field in any other way.

BrigidRegan commented 9 years ago

Hi Roland Sam and I have discussed this issue. As you suggest, Sam agrees blank = unknown. In cases with ongoing seizures, the age at last data collection/age at last review can be entered. Do you agree?

rolandkrause commented 8 years ago

Can you check with Sam whether the version supplied in the "alternative" GGE project (https://redcap.uni.lu/redcap/redcap_v6.5.4/index.php?pid=62) is acceptable?

BrigidRegan commented 8 years ago

Yes I will do and let you know how I go

BrigidRegan commented 8 years ago

Hi Roland I can't tell what has changed in the alternative GGE project for the age at last occurrence? Or do you mean the changes to the age of onset?

rolandkrause commented 8 years ago

Age at first seizure, I’ll modify the title.

On November 12, 2015 at 21:29:37, BrigidRegan (notifications@github.com) wrote:

Hi Roland I can't tell what has changed in the alternative GGE project for the age at last occurrence? Or do you mean the changes to the age of onset?

— Reply to this email directly or view it on GitHub.

BrigidRegan commented 8 years ago

I really like it - will run it past Sam but I think it works really well

rolandkrause commented 8 years ago

I’ve discussed this with Sam in person, will implement it for all forms.

Shouldn’t  the wording and order  be changed on the “paper” - excel forms too? 

On December 10, 2015 at 01:10:53, BrigidRegan (notifications@github.com) wrote:

I really like it - will run it past Sam but I think it works really well

— Reply to this email directly or view it on GitHub.

rolandkrause commented 8 years ago

Solved, Sam has agreed to this procedure.

BrigidRegan commented 8 years ago

Hi Roland Sam asked if it was possible to exclude the onset age of 'Classical febrile seizures' from the automated calculation of 'Age at first seizure (of any type)' on each form? Technically 'classical febrile seizures' are excluded from the onset of epilepsy and he wanted this to be reflected in age at first seizure (of any type). Onset of 'Other seizures provoked by fever' can be included in the calculation. Thanks