Good Morning Everyone
ASI INDC PROJECT ETHICS FROZEN DUE TO COVID. Non-essential research has been stooped until further notice.
UPDATE: In the meantime, if you are interested in learning the EASI and live in the UK or Ireland please visit: https://www.sensoryproject.org/easi. See the EASI Conversion Pathway below.
You can make enquiries about this here: https://forms.gle/Z2cwYuTuj2A3g5DN8
We hope you are all well and safe. It is a tricky time right now. Things are a little different to usual. Many of us are not doing our usual jobs, some of us are already or are likely to start to work in the hospitals on the wards as part of the NHS service delivering care to people with Covid-19.
Zoe emailed us all last week. After this email, we spoke to Zoe to explain what is going on in the UK; she sends us all her kind regards. She knows and understands what is happening all around the world, with many of us all having to make considerable adjustments and adaptations to the new roles and lives we find ourselves negotiating.
Zoe and some of the EASI Research Team dong the statistics are looking at and checking the data already inputted on Redcap, while they, like some of us, are stuck at home caring for others or self isolating. They are initially looking at the data mix, to check age spread and gender mix. As part of this, they are ‘seeing’ the data collection in general and will flag, with individual testers or those entering the data, where data is missing or incomplete.
They will email the tester who ascribed the participant number originally (often this tester entered the first details, including the demographic details) if they find something missing on your data sets or have questions. This is because on their system, the person first opening the file and therefore doing the demographic details is the named tester. If someone has started to enter data for a participant, please do not change to yourself, if you take over entering the rest of the data/scores. They are examining each data set already added, one at a time. When they check it, they will message off to you if something is incorrect. They know they might not get answers for a while.
Zoe has agreed that all data in areas can be added by one person if they hold the data sets at this time, and afterwards we can supply information about who contributed to which data, ensuring therapists are recognised for their contributions.
While Zoe is encouraging people who are able to send in data if they have it, to help them start to crunch the data, they do understand many people are doing extraordinary things and balancing a lot. They do not want to add additional pressure or stress at this time.
Please see the following hints and tips from Zoe about data entering. Zoe will send further updates about common errors, tricks and tips as they go along checking the data sets from across the globe. They were delighted to be able to start to look at data from the UK:
- Please do not open a line and get a participant ID and then not proceed with entering the person’s demographic. We know some of you are just looking at and trying to see how the system works, but once you do this, a participant ID has been allocated to your tester ID.
- If you do not have a tester ID, do not worry. You can use someone else’s, as the allocation of who has been a tester will now be done differently to allow data entry by those able to do rather than by who you are allocated.
- Ensure once a participant’s data is started the entering therapist ID is not changed, even if someone else completes or adds test scores. (Allocation to therapists will be sorted later via the Country/AreaLeads records)
- Please ensure the demographic form is always entered first. These need to be correctly completed to ensure the spread is correct across our sample (age and gender).
- Once the records are cleaned up, they will send the leads the age and gender tables, so we can plan for who we need to recruit when we start going back to our work. We are anticipating testing of children will not resume until there is no longer a risk of infection, given that participation in this research should ‘do no harm’.
- We will maintain and contact our University Ethics leads closer to the time to help guide our decisions regarding if and when EASI testing can resume.
- Please ensure you hit the completed “button” if the child ended before all test items were administered, indicating the child had therefore met discontinuation criteria.
Please do check the data you have already entered for “red spots” indicating missing data? We will be contacting England area leads to help identify data tester/tester id mismatches.
We wondered about having an EASI ‘REDCap’ coffee online catch up to answer any questions you cannot solve via the WhatsApp groups? Please do let us know via your country/area leads if you feel this would be useful and supportive to you and your area team.
Many of you will have heard or seen that the ASI Vision 2020 Conference and launch of the EASI have been postponed because of COVID-19.
ISiC 2021 is now being hosted in LA, USA 15-17 July 2021.
Thank you all for your continued effort, time and commitment to this project to ensure children everywhere are understood.