Congenital cytomegalovirus screening and treatment practices and data

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Information Governance

FOI Administrator

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Our reference: FOI 3852 2023/24

Dear Alice Fletcher-Etherington,

Thank you for your Freedom of Information Request dated 28 January 2024
requesting information about University Hospitals Birmingham NHS
Foundation Trust (UHB).

We endeavour to respond to all FOI Requests within 20 working days;
however, this is not always possible. Unfortunately, due to organisational
pressures, there has been a delay in providing you with your response, and
I apologise for this.

If you require a response to your request, please can you confirm this by
20 September 2024 by responding to this email ([1][email address]).

If I do not hear from you, I will assume that you no longer require the
information, and your request will be closed.

Thank you for your patience and understanding.

Kind Regards,

FOI Administrator

Information Governance

University Hospitals Birmingham NHS Foundation Trust

Email: [2][University Hospitals Birmingham NHS Foundation Trust request
email]

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From: Alice Fletcher-Etherington <[FOI #1077760 email]>
Sent: Sunday, January 28, 2024 3:37 PM
To: FOI <[email address]>
Subject: Freedom of Information request - Congenital cytomegalovirus
screening and treatment practices and data

This Message has originated outside your organisation.

Dear University Hospitals Birmingham NHS Foundation Trust,

The purpose of this FOI request is to ascertain your Trust’s approach to
screening for and treating congenital cytomegalovirus (cCMV).

The questions have been designed so that they can be answered within the
limits (on time, cost, type of information etc.) set out in the Freedom of
Information Act and the Information Commissioner’s Guidelines. If it is
not possible to provide the exact information requested, please supply the
underlying information in narrative form or whichever format you have
available.

Definitions of acronyms and terms used in the FOI request:
CMV: cytomegalovirus
cCMV: congenital cytomegalovirus
SNHL: sensorineural hearing loss
‘Practices’ refers to any standard operating procedures or clinical
protocols, guidelines, practices or pathways.
‘Information’ refers to any recorded information required to be disclosed
in response to requests under the Freedom of Information Act.

If different hospitals or services within your Trust have different
Practices or data availability, please provide separate Information or
data for each hospital or service (indicating clearly which hospital or
service the Information relates to).

Q1. Please provide copies of any Information containing or evidencing
Practices used within your Trust whereby newborns who are referred to
audiology following their newborn hearing screening test, or
newborns/children who demonstrate abnormal hearing at a later stage, are
tested for cCMV. Such Practices could include, but are not limited to,
early cCMV detection pathways whereby newborns are tested at point of
referral to audiology from the newborn hearing screening programme. Please
include details about the intended timescales for testing, carrying out
tests and returning test results, if this information is recorded.

Q2. If your Trust does employ Practices whereby newborns/children with
abnormal hearing are tested for cCMV, please indicate at which stage
samples are taken (you may select more than one):
❏ By the newborn hearing screener at the point of referral
❏ By the audiologist at the first appointment after babies have been
referred from the newborn hearing screen
❏ By the audiologist at detection of SNHL in a baby referred from the
newborn hearing screen
❏ By another healthcare professional (not an audiologist) following
detection of SNHL in a baby referred from the newborn hearing screen
❏ At detection of SNHL in older babies and children (i.e. after the
newborn hearing screening and testing period)
❏ Unknown
❏ Other, please provide details:

Q3. If your Trust does employ Practices whereby newborns/children with
abnormal hearing are tested for cCMV, please indicate what type of sample
is taken (you may select more than one):
❏ Saliva swab
❏ Urine
❏ Blood test for the infant
❏ Blood test for the mother
❏ Infant blood spot (Guthrie) card testing
❏ Unknown
❏ Other, please provide details:

Q4. Please provide copies of any Information containing or evidencing
Practices used within your Trust whereby children are tested for cCMV as
part of investigations of symptoms (in either the mother or child) that
are unrelated to hearing. These could include:
Maternal symptoms of CMV (flu-like symptoms)
Symptoms of congenital infection identified before or after birth, such
as:
• Antenatal abnormalities e.g. on ultrasound scan
• Characteristic rashes caused by cCMV (petechiae or blueberry muffin
rash)
• Intrauterine Growth Restriction
• Microcephaly
• Jaundice
• Hepatosplenomegaly
• Neonatal visual signs/symptoms
• Neonatal seizures
Symptoms of congenital infection in older children, such as:
• Neurodevelopmental delays
• Special educational needs and disabilities (e.g. autism, ADHD)
• Cerebral palsy
• Seizures
• Visual or sensory impairment

Q5. Please provide copies of any Information containing or evidencing
Practices used within your Trust following a diagnosis of cCMV in a child.
This could include, but is not limited to:
• Information about any Practices involving the prescribing of antiviral
treatments
• Details of the department(s) that the child would be referred to

Questions 6-9 relate to the provision of data for a specific five-year
period. If you do not hold data for this time period, please supply data
for any period for which you have available data (preferably a recent
five-year period) and specify the beginning and end dates. If the answer
to any question is between 1 and 5 (and therefore the true figure cannot
be shared in accordance with Section 40 of the Freedom of Information
Act), please indicate this by giving the answer “<5”. Please also indicate
if the relevant hospitals or services within your Trust have changed
during this period.

Q6. Between 1 January 2018 and 31 December 2022, how many children were
diagnosed with cCMV within 28 days of birth, within your Trust? This
should include children born outside of your Trust who were diagnosed by
services within your Trust.

Q7. Of the children who were diagnosed with cCMV within 28 days of birth
in this time period (Q6), how many:
a. Previously had a newborn hearing screening test
b. Had been referred to audiology following their newborn hearing
screening test
c. Were given antiviral treatment for cCMV following diagnosis

Q8. Between 1 January 2018 and 31 December 2022, how many children were
diagnosed with cCMV between 28 days and 18 years of age, within your
Trust? This should include children born outside of your Trust who were
diagnosed by services within your Trust.

Q9. Of the children who were diagnosed with cCMV between 28 days and 18
years of age in this time period (Q8), how many:
a. Previously had a newborn hearing screening test
b. Had been referred to audiology following their newborn hearing
screening test
c. Were given antiviral treatment for cCMV following diagnosis

Yours faithfully,
Alice Fletcher-Etherington
CMV Action

CMV Action is the only UK charity offering advice and support to families
affected by congenital CMV (cCMV). For more information:
[3]https://cmvaction.org.uk/.

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