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EMPiRE newsletter Apr ‘15 We are quickly nearing the time to hand over the database to the analysis team and it is crucial that we have as much complete seizure data as possible otherwise the data we have collected from our participants will not be used in the primary analysis. We have found that referring to medical notes and the neurologist can be helpful if women cannot be contacted to confirm missing diary entries. However, we cannot assume that nothing recorded in the diaries regarding seizures means that the lady didn’t have any. If you have any queries please contact; Diary Queries Please note, the protocol states that PIDFs are to be filled out for participants who complete the study or request to withdraw. For any participants who have had a PIDF filled out and they have not completed or requested to withdraw, please file a note to explain that the participant has not been withdrawn and remains in the study. Well done to those sites who have managed to enter all their CRFs so far! We will award M&S vouchers to each site as a thank you for entering all data and resolving all data queries. Please ensure that once data entry for a complete or withdrawn participant is finished, that you enter an electronic PIDF form for them so that we have a better idea of how fabulous you all are at completing your data entry! For participants that are lost to follow up, there is no need to add an electronic PIDF form, however the trial office will need to be informed of this. PIDFs Data Entry Please also ensure that all SAE forms are also entered on to the database. Any database related problems and questions should continue to be directed to the coordinating midwife for your site or to Sian. Sian Newton EMPiRE Trial Coordinator Email: s.newton@qmul. ac.uk Tel: 0207 882 5883 Maria D’Amico EMPiRE Data Assistant Email: m.damico@qmul. ac.uk Tel: 0207 882 6695

EMPiRE Newsletter April 2015

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Page 1: EMPiRE Newsletter April 2015

EMPiREnewsletter Apr ‘15

We are quickly nearing the time to hand over the database to the analysis team and it is crucial that we have as much complete seizure data as possible otherwise the data we have collected from our participants will not be used in the primary analysis. We have found that referring to medical notes and the neurologist can be helpful if women cannot be contacted to confirm missing diary entries.

However, we cannot assume that nothing recorded in the diaries regarding seizures means that the lady didn’t have any. If you have any queries please contact;

Diary Queries

Please note, the protocol states that PIDFs are to be filled out for participants who complete the study or request to withdraw.

For any participants who have had a PIDF filled out

and they have not completed or requested to withdraw, please file a note to explain that the participant has not been withdrawn and remains in the study.

Well done to those sites who have managed to enter all their CRFs

so far! We will award M&S vouchers to each site as a thank you for entering all data and resolving all data queries.

Please ensure that once data entry for a complete or withdrawn participant is finished,

that you enter an electronic PIDF form for

them so that we have a better idea of how fabulous

you all are at completing your data entry! For participants that are lost to follow up, there is no need to add an electronic PIDF form, however the trial office will

need to be informed of this.

PIDFs

Data Entry

Please also ensure that all SAE forms are also entered on to the database.

Any database related problems and questions should continue to be directed to the coordinating midwife for your site or to Sian.

Sian Newton

EMPiRE Trial Coordinator

Email: [email protected]

Tel: 0207 882 5883

Maria D’Amico

EMPiRE Data Assistant

Email: [email protected]

Tel: 0207 882 6695

Page 2: EMPiRE Newsletter April 2015

EMPiREnewsletter

Do you know about the #WhyWeDoResearch campaign? It’s a social media campaign aiming to raise research awareness and opportunities to patients, staff and public and everyone is welcome to get involved. You can upload a photo or tweet with comments and tag #whywedoresearch! Have a look at what @ktnetwork did.Follow the Women’s Health Research Unit on twitter @KT_Network for updates and tweets about EMPIRE!! You can also follow @JPUHResearch for more about #whywedoresearch campaign.

» Before 400 B.C., it was believed that epilepsy was a curse that afflicted people with the gift of prophecy. Hippocrates then classified it as a brain disorder.

» Until 1970, in the UK it was illegal for epileptic people to marry.

» Some of the world’s most influential people have been rumoured to have had epilepsy; Charles Dickens, Michelangelo, Aristotle, Socrates, Julius Caesar, Vincent Van Gogh and Alfred Noble.

#Why we do research...

Interesting epilepsy facts

Apr ‘15