Karin Sundberg, NNFM Nordic Network of Fetal Medicine meeting in Gothenburg 14-16th of April 2015.

1. NNFM
Nordic
Network
-­‐
Fetal
Medicine
April
14
-­‐
2015
Gothenburg
Invasive
Fetal
Medicine
A
workshop
on
Nordic
collabora7on
in
invasive
fetal
medicine
–
supported
by
Nordic
Council

2. Challanges
within
invasive
fetal
medicine
and
fetal
therapy
!
Rare
condiEons
-­‐
how
to
gain
rouEne
Low
cases
load
–
paHern
recogniEon
may
fail
Training
on
paEents
can
be
fatal
for
the
fetus
Decreasing
numbers
of
CVS
aMer
NIPT
Cut
down’s
by
hospital
owners
!

3. AIM
of
today
!
To
create
collabora7on
across
our
Nordic
borders
hopefully
resul7ng
–
along
the
way
-­‐
in
improvements
for
our
pregnant
women
and
pa7ents
by
establishing
networks
for
educa7on
and
competence
development
for
doctors
working
within
invasive
fetal
medicine.

4. The
funding
by
Nordic
Council
ApplicaEon:
Send
January
2014,
concerning
the
establishment
of
a
Nordic
collaboraEon
within
competence
development
in
the
invasive
part
of
the
fetal
medicine
-­‐
NO
responce
!
200.000,-­‐D.kr.
oktober
2014
–
very
suddenly
More
funding
will
depend
on:
Establishings
las7ng
agreements
between
our
Nordic
departments

5. The
funding
by
Nordic
Council
200.000,-­‐
D.
Kr.
for
this
meeEng
to
cover:
accomodaEon
transports
foods
and
meeEng
faciliEes
ect.
43
parEcipants
today
19
applied
for
funding
KS
responsible
for
accounEng
in
details
can
be
transported
to
next
year/
or
returned
NC
has
encouraged
us
to
apply
for
a
next
meeEng/conference
in
2016
.
More
funding
will
depend
on:
Establishings
las7ng
agreements
between
our
Nordic
departments

6. VIP
message
All
details
for
reimbursement
through
Karin
–
must
be
filled
out
TODAY
–
and
all
reciepts
possible
passed
on
to
Karin
!!
Karin
will
pay
the
hotel
directly
at
check
out
Thursday
-­‐
before
for
those
who
need
it.

7. Tuesday April 14th
A workshop on Nordic collaboration in invasive fetal medicine – supported by Nordic Council
Moderators: Karin Sundberg – Rigshospitalet Copenhagen
Peter Lindgren – Karolinska Stockholm
11.00-11.15 am
- Welcome to NNFM by Bo Jacobsson, Sahlgrenska Gothenburg.
– Introduction: Karin Sundberg (DK) and Peter Lindgren (SE).
11.15-11.35 am – Invasive Fetal Medicine – organisation Denmark, Karin Sundberg.
11.35-12.10 am – Invasive Fetal Medicine – organisation Sweden, Peter Lindgren.
12.10-12.30 pm – Invasive Fetal Medicine – organisation Norway, Torbjørn Eggebø.
12.30-13.30 pm Lunch
13.30 – 13.50 pm – Invasive Fetal Medicine – organisation Finland, Aydin Tekay.
13.50 – 14.05 pm – Invasive Fetal Medicine – organisation Iceland, Hildur Hardardottir.
14.05 – 14.15 pm – Overview Nordic countries – Olav Bjørn Petersen – Århus-DK.
14.15 – 14.45 pm Fetal aortic valvuloplasty, Mats Mellander (SE)
14.45 – 15.45 pm
Coffee/cake in smaller work shop groups of mixed nationalities
Brainstorm concerning future potential collaboration fields,
including competence development of Nordic doctors in invasive fetal medicine.
15.45 – 16.00 pm Break
16.00 – 16.45 pm
Reporting by the groups and discussion of proposed ideas and eventual constitution
of a stearing group on invasive competence development under NNFM.
16.45 – 17.00 pm
Conclusions, Karin Sundberg (DK) and Peter Lindgren (SE)
19.00 pm
Dinner at the Clarion Hotel Post

8. 8
DENMARK
Invasive Fetal Medicin – Organisation
by Karin Sundberg
Fetal Medicine Dept. Rigshospitalet - Copenhagen

9. Denmark
-­‐
demographics
• 5,6
mill
inhabitants
• Public
health
care
system
• 55-­‐60.000
deliveries/year
• 21
obstetric
departments
• ”All”
deliveries
take
place
in
public
hospitals
• 99%
of
the
prenatal
care
in
public
hospitals
• >
95%
aHend
1.
trimester
T
21
screening
Føtodatabasen
–
Astraia
DFMS
–
Dansk
Føtalmedicinsk
Selskab
9

10. 10
Danish
naEonal
guideline
2004
0
10
20
30
40
50
60
70
80
90
100
0 1 2 3 4 5 6
Detectionrate(%)
False-positive rate (%)
Random
Maternal age
Triple test
PAPP-A + β-hCG
NT
NT and PAPP-A+ β-hCG

11. • Postnatal
versus
prenatal
T21
diagnosis
Danish
T21
Dansk
CytogeneEsk
Centralregister
0
20
40
60
80
100
120
140
160
180
number
year
postnatal
prenatal

12. 12
Postnatally
diagnosed
with
T21
Danish
CytogeneEc
Register
0
10
20
30
40
50
60
70
number
year
postnatal
2013
births
not
completed

13. Yearly
number
of
invasive
test
(AC
+
CVS)
13
Invasive
tests
-­‐
significantly
decreased
Danish
CytogeneEc
Register
0
1000
2000
3000
4000
5000
6000
7000
8000
2000
2001
2002
2003
2004
2005
2006
2007
2008
2009
2010
2011
2012
2013
number
year

14. 14
Change
in
type
of
invasive
tests
0
500
1000
1500
2000
2500
3000
3500
4000
4500
2000
2001
2002
2003
2004
2005
2006
2007
2008
2009
2010
2011
2012
2013
Number
Year
AC
CVS
Danish
CytogeneEc
Register

15. CVS
–
Amniocentesis
in
Denmark
Undertaken
at
16
departments
in
Denmark
–
some
do
less
than
100/year
!!!
Greenland
and
Faroe
Islands
only
do
Amniocentesis.
BIG
PROBLEM
for
educaEon
and
competence
maintainance
!!
Quality
sEll
good
–
all
use
same
TA
technique
and
needleguide
–
very
low
naEonal
spontaneous
aborEon
rate
Future
quality
?

16. Centralised
invasive
procedures
in
Denmark
to
Rigshospitalet
Intrauterine
blood
transfusions
–
all
(15
to
34
weeks)
Intrauterine
therapeu7c
drains
thorax
–
”bladder”
Treatment
of
TTTS
–
by
laser
or
cord
occlusion
(16-­‐24
weeks)
Complicated
monochorionic
cases
twin/triplets
op7ng
for
selec7ve
fe7cide
by
cord
occlusion
/
radiofrequency
abla7on
(resent).

17. DENMARK
–
Rigshospitalet
-­‐
CPH
NaEonal
Center
for
Fetal
Therapy
Invasive
procedures
CVS/AC

18. Invasive
procedures
at
the
4
larger
university
hospitals
in
Denmark
Fetal
reduc7ons
-­‐1.
trimester
Selec7ve
fe7cides
-­‐
discrepancy

19. Centralised
invasive
procedures
in
Denmark
to
Rigshospitalet
Our
invasive
team
is
presently:
Lisa
Neerup
Jensen,
Kirsten
Søgaard
and
Karin
Sundberg
Can
be
contacted
on
0045
35
45
08
77
We
receive
paEents
from
all
other
Nordic
Countries
–
referred
from
public
hospitals
second
opinion
or
for
invasive
treatment
.
A
tradiEon
started
by
Connie
Jørgensen
–
Head
of
Department
unEl
2012
–
leO
us
for
Malmoe-­‐
is
now
head
of
Emma
Klinikken
!

20. Danish
organisa7on
–
legal
termina7ons
!
Free
aborEon
unEl
12+0
week
for
persons
on
Danish
ground
gestaEonal
age
determinated
by
CRL
or
LMP
AMer
12+0
weeks
up
to
22+0
weeks
The
regional
aborEon
council
is
applied
by
the
MD
in
charge
!
Five
regionale
councils
cover
the
country
Level
of
severity
evaluated
–
consistency!!!
Each
aborEon
council
has
3
members:
A
MD
in
OB/GYN,
A
person
from
the
social
authoriEes
A
psyciatrist
In
simple
cases
usually
by
phone
-­‐
answer
within
24
hours
If
terminaEon
is
denied
–
the
paEent
can
appeal
to
the
superior
NaEonal
aborEon
appeal
council
of
3
persons
too
regulated
by
The
NaEonal
Health
Authority
-­‐
SST.
ExcepEons
–
only
for
lethal
condiEons
or
severe
maternal
health
issues.