Quarterly+Newsletter+January+2021+Edition

Quarterly Newsletter January 2021 Edition: PREVENT Study Issue 4 Last quarter at a glance Crossed recruitment of 10,000 mothers! o PREVENT study was launched in November 2019 and recruitment commenced on 1 March 2020. However, the study had to be suspended temporarily because of the ongoing pandemic. Despite the various challenges pertaining to this situation, our team was able to restart the recruitment in a phased manner across study sites. Recruitment at the Calicut site started in July 2020, Bangalore in August 2020 and Hubli in September 2020. The team achieved a milestone of 10,000 women recruited to the study on December 8. We are immensely grateful to our collaborators and NIHR for supporting us through these challenging times. 1

o The month of December was filled with festivities at PREVENT in all the three centres as we reflected on memories of the year 2020, be it good or bad given how the whole world faced the pandemic bravely. It was not an easy journey for PREVENT team across the three sites as well but everyone put up a brave and cheerful face and gave it their all, thus achieving the nearly impossible 10,000 plus recruitment milestone despite all the hardships and challenges. 2

Follow-up of neonatal recruits and CEI activities: o Three-months follow-up of neonatal recruits are actively taking place in all the three centres and so far, we have followed-up 51 babies. o Daily counselling the families of recruited babies and engaging with them at an allocated time of the day till the baby gets discharged to build rapport and build trust of the families. o Forming WhatsApp groups for families with neonatal encephalopathy/neonatal seizures. o Calling recruited babies’ families every month on the date of baby’s birth to wish them monthly birthdays and enquiring about the wellbeing of the baby. o Counselling bereaved families and caring for them alongside encouraging them for autopsy to help their next pregnancy and others going through similar situations. o Giving families of recruited babies a follow-up card with follow-up dates for 3- months, 6-months, 12-months, 18-months and reminding them about upcoming follow-ups through calls. o Educating the families at discharge and each follow-up visit about the correct way of breastfeeding practices, caring for the baby, recognising danger signs, importance of regular follow-ups, sensitising the families towards the current health concerns of the baby and other aspects of improving the well-being of the baby. 3-month follow-up 3

o The first PREVENT recruited baby who had moderate HIE and seizures at recruitment came back for first 6-months follow-up in late January in Calicut. This baby had no seizures after discharge and development was found to be normal at 6-months of age but of course will require constant monitoring till 18-months of life due to some mild persistent abnormality. o We at PREVENT hope to help many such babies and their families cope with birth-related brain injuries. The fact that many babies get to go home without anti-epileptic drugs is a revolutionary change in itself. 6-month follow-up Other updates: o Many neonatal recruits were observed to die and the reason was unknown. In an attempt to answer this question, we started the process of piloting the feasibility of neonatal autopsies in PREVENT-Hubbali, thus trying to assess the consent rates for neonatal autopsies in India. So far we have had five successful autopsies. The process of starting a similar practice in other sites has began. o Unfortunately, two of our reasearch nurses in Calicut and Hubbali were detected COVID-19 positive in January and are currently under treatment. We hope they have a speedy recovery. A huge shoutout to the rest of the team who is ensuring that the work is progressing smoothly! 4

at the next quarter (February-April 2020) o Moving steadily towards the first 15,000 OBG recruits. o The preparations and training for using epartogram and foetal auscultation will begin shortly. o Preparations for other care bundles also will begin. o PI’s meeting with global investigators to discuss the next steps for second year. Recruitments to PREVENT from July-January across all three centres 1 4670 025 1 3-month 005 1 5

Heartiest congratulations to our three Neonatal Neurology Clinical Research Fellows Dr Vijay Kumar, Dr Vidya BU, and Dr Hemadri Vegda for giving outstanding presentations of case studies from PREVENT in the ICH Neuroscience Research Retreat 2021 held between 13 and 14 January 2021. 6

It’s About You Almost to the beautiful land! This be the watchword to cheer thee, When fierce tempests rage with blasting breath, And dangers and trials are near thee, No peace, no safety, no enduring cheer, Yet glad you hail each new day’s morn; A glorious prize is given, To wage in the struggle of life, Then the sweet victory cometh, That endeth the toilsome strife. It’s about you!!! Mrs Sharon Priyanka, MSN Sharon is a Neonatal Neurology Research Nurse at PREVENT and based in Bangalore. In her spare time, she enjoys knitting, cooking and reading. 7

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