Notes and actions from Stillbirth Clinical Study Group 16th May 2013
Present: Gordon Smith (Chair) (GS), Neil Sebire (NS), Tracey Mills (TM), Steve Charnock-Jones (SCJ),
Catherine Calderwood (CC), Basky Thilaganathan (BT), Janet Scott (JSc), Charlotte Bevan (CB), Alyson
Hunter (AyH), Alex Heazell (AH), Dimitrios Siassakos (DS) and Jane Sandall (JS)
Apologies: Angela Wood, Neal Long, David Cromwell, Jim Thornton (JT), Peter Brocklehurst
Introductions: Introductions of new members Alex Heazell and Alyson Hunter and CC’s new post as
Clinical Director for Maternity, Young people and children at NHS England. Shantini Paranjothy to
attend future meetings representing Wales.
Previous minutes – discussed.
1. Admin/processes for CSGs. RCOG has a new CSG admin person called Elly Hibbet. Sands will
continue to fund the CSG independently of RCOG and has offered an annual contribution to overall
CSG costs.
2. Setting research priorities
2.1 GS reported NIHR HTA commissioners have asked RCOG Research committee – chaired by Lucilla
Poston - to provide at least 5 suggestions for research calls for an HTA meeting in July (and again in
November). This will occur 3 times a year. CSGs to fill out PICOs (Patient Intervention Comparator
Outcome) and submit to Research Committee and Academic Committee so that they can rank the
suggestions by June 16th.
2.2 NS prepared PICO on minimally invasive autopsy for Fetal Medicine CSG to discuss as potential
research priority. This emerges from his work as co-investigator on recently published study which
found that full-body MRI scans combined with non-invasive investigations were as effective as a
standard autopsy in detecting major abnormalities that led to perinatal and infant death. New study
will evaluate parental and professional acceptability of MIA. CSG confirmed strong lay and scientific
support for the PICO given NS track record in research and the nature of the proposal.
3. MBRRACE-UK – national data collection confidential enquiry for 2015 report
The CSG-supported Sands submission for unexpected term stillbirth has been selected as the topic
for confidential enquiries for 2015 report. GS to discuss with MBRRACE members Liz Draper and
David Field the possibility of a control group add on (this may need further funding) to the enquiry.
4. The Life Study
GS reported back on Life Study. Birth Cohort of 100,000 at cost of £35 million. Approaching parents
at 20 weeks and recruiting at 28 weeks with first assessment including bloods. Depending on
demographics, anticipate that there would be 300-500 SBs in the cohort. Thanks to input from
members of the CSG the Life Study is now also considering collection of placental samples.
5. Active research projects funded with support from CSG
5.1 NS updated on Sands-funded study to develop evidence base for autopsy findings in 1,000 SBs.
Recruited research fellow for 2 years. AH and NS also discussing possibility further work from this
study.
5.2 GS updated on Sands/NIHR funded prospective cohort study looking at role of 3rd trimester scan
in assessing IUGR, as proxy for SB. Statistician employed and due to start on July 1st. Sands funding
first 2 years with view to renewal.
5.3 DS’s Sands-funded 2 year qualitative study on bereavement care (from parent and professional
perspective) has had good uptake; interviews with health professionals already complete.
5.3 CC updated on AFFIRM, the £350,000 project funded by the Scottish Scientific Medical Officer,
Sands and Tommy’s, on fetal movement. Jane Norman is PI. Participation from Scotland, Perinatal
Ireland and possibly Wales. Will educate women and health professionals about fetal movement
awareness and will standardise a package of care when mums report DFM. Powered to show a
reduction of SB by 25% over a 4 year period. Due to start recruitment in summer.
5.4 GS reported on JT’s RfPB 35/39 study looking at induction of labour of nulliparous women over
35 years old, at 39 weeks plus versus conservative management. Primary outcome C-section rate;
not powered for SB as 6-700 recruited, but useful since C-section so often associated with induction
and ‘timely’ delivery only intervention to prevent term SB.
6 Update on members and other work
6.1 AH reported on Manchester Advanced Maternal Age Study looking at why older women have
greater SB risk using placental physiology techniques and looking at placental
degeneration/inflammation assoc. with perinatal outcome.
AH submitted short summary of his application for NIHR Clinician Scientist fellowship grant. Focus on
SB, reduced fetal movement and placental factors. CSG members suggested some amendments to
the application. AH to amend and CSG gave their support.
6.2 TM reported on surveys she has been conducting in care in a subsequent pregnancy after loss.
Will be resubmitting paper to BJOG shortly.
6.3 JS reported on RESPOND exploratory feasibility study she is working up to look at possibility of
patients becoming more involved in patient safety, using patient alert system already trialled in
Australia. Applying in response to HSDR call with deadline of end of May.
6.4 AyH reported her involvement in AFFIRM and with Perinatal Ireland where the focus is on 1st
trimester screening looking at placental indices, IUGR prediction, and perinatal outcome in hi versus
low-risk women.
6.5 CB reported on NPEU’s Listening to Parents survey, a national survey sent to half of bereaved
parents in 2012 looking at their experience of antenatal and bereavement care and post mortem
services, now in second wave of mail out with response rate of around 30% and due to report in
2014.
6.6 BT reported on papers due to come out in White Journal in June looking at mortality in twins and
identification of discordant growth where one twin much smaller than the other to identify true
IUGR.
6.7 JSc reported that Foundation for Sudden Infant Death (now the Lullaby Trust) and (AMR) Action
for Medical Research are in discussion re possible funding for study of maternal sleep position in
relation to stillbirth, as follow up to Auckland study in 2012, as well as a wider discussion of
extending SIDS research successes to stillbirth research. Ed Mitchell in UK in June and will meet with
charities and GS.
6.8 BT developing proposal for Individual Patient Data Analysis study, using research data from 9
large centres in UK and abroad for pregnant women who have had a uterine artery Doppler; data
includes demographic information and perinatal outcome, including SB. BT to analyse significance of
demographic factors to risk of SB; previous research by BT suggests these risks are not as significant
as Uterine artery Doppler indices. The Stillbirth Research Network published a meta-analysis in
JAMA in 2011 showing 80% of SBs not associated with common demographic factors which
contribute to only 19% of SBs. The CSG expressed their support for the study.
CC requested opportunity to have access to the data BT will collect for work to support promoting
Domain 1 (Preventing people from dying prematurely. Improvement Indicator: 1.6 II) Neonatal
mortality and stillbirths) of the NHS Framework. BT to liaise with her.
6.9 DCJ reported on molecular biology work looking at unidentified pathogens in placental samples
from the POPS cohort.
6.10 GS reported on 3 epidemiological studies from Scottish data set: birth weight centiles of term
SBs; recurrence risk of SB in relation to cause and timing; relationship between SB risk and previous
C-section.
6.11 Discussion of IUGR in previous pregnancy as key indicator for SB risk in subsequent pregnancy.
7. National prevention work
7.1 JSc reported back on DH-backed working groups from Sands/DH Stillbirth workshop in March
2012. Several ‘Task and Finish’ groups have emerged fully supported by Dan Poulter, new minister in
charge of maternity and patient safety.
 ‘Public health messages re. stillbirth’: a meeting was held in Jan 2013 with reps from royal
colleges, pubic health bodies, DH, Sands, to develop public health messages regarding SB
risk. Sands currently looking for funding to test these messages with focus groups.
 ‘Key indicators for stillbirth’ – comparing data sources for SB risk and whether all potential
risk factors are collected.

‘Standards for perinatal mortality review’ – Tracey Johnson, BMFMS, chairing. Met in Jan
2013. Has outlined its remit to the Commissioning Board and looking for support. CC on this
group.
7.2 JSc reported on work in Wales. Welsh Assembly Social Care Committee’s recent Stillbirth Enquiry
made 9 recommendations which are now being followed through by the Welsh Initiative for
Stillbirth Reduction (WISR). Sands on this group.
7.3 CC reported on the Scottish Stillbirth Subgroup which is holding a government funded SBseminar on the 14th June with AH and GS speaking.
7.4 JSc reported the Sands facilitated lunchtime Stillbirth Seminar at the recent BMFMS in Dublin
was well attended and feedback positive.
6.5 AH/GS reported that RCOG/RCPath are organising study day in November partly in response to
letter from parent complaining about lack of consistency in standards of growth retardation. This is
to help everyone better understand the pathological correlates of what clinicians see in a scan - to
bridge the gap between science and practice.
Actions:



CC to set up meet with MBRRACE members to further discuss confidential enquiry
design for unexpected term SB.
BT to communicate with CC re. research data on demographics of women who’ve
had a SB.
Not yet concluded action from previous meets: CB to request again from DH if David
Cromwell might be involved in ‘Key data indicators for stillbirth task and
finish group’.
Next Meeting: 29th November 2013