A new, in e disciplina y, mul i-
s akeholde Eu opean ne wo k o imp o e
heal hca e se ices, esea ch and ou comes o Adolescen s and Young Adul s
wi h cance .
Deli e able Repo
WP4 – Ope a ion o STRONG-AYA ecosys em, s akeholde and pa ien
in ol emen , dissemina ion, exploi a ion, communica ion
Deli e able D4.9
Fi s annual epo on he p og ess and success o ecosys ems.
Due da e o deli e able: 30/09/2024
Ac ual submission da e: 20/01/2025
P ojec : STRONG-AYA
Lead Con ibu o Dan S a k
Email d.p.s a [email protected]
O he Con ibu o s Dan S a k, Oana Lindne , Emily Connea n, Richa d Fel bowe , Nicola Hughes
(UOL); Leona d Wee, Simone Hanebaum (NKI)
Emails
[email p o ec ed].uk; [email p o ec ed].uk;
[email p o ec ed].uk; n. [email protected];
[email p o ec ed]l; [email protected];
Due da e
30/09/2024
Deli e y da e
20/01/2025
Deli e able ype
R
Dissemina ion le el PU
Desc ip ion o Wo k Ve sion Da e
Final d a o
V1.0 20/01/2025
Fi s d a o e iew V1.0 31/10/2024
Desc ip ion:
Annual epo o he i s yea o ope a ion o he S ong AYA local, na ional and
in e na ional ecosys ems.
Including a epo on he me hodology o assess he eliabili y o S ong-AYA ou comes
by assessing da a quali y and da a p ocessing by S ong-AYA sys ems.
1. Publishable summa y (max ½ page)
Summa y:
This documen de ails p og ess o e he pas 12 mon hs owa ds de eloping he app op ia e
in as uc u e o he unc ioning o local, na ional, and a pan-Eu opean ecosys em o he gene a ion,
analysis and in e p e a ion o da a ela ed o AYA li ing wi h o a e cance .
Deli e able D4.9 aims o desc ibe wha ac ions om each indi idual oadmap ha e been success ully
de ined and achie ed o deli e ou ecosys ems. I also lis s which ac ions a e s ill o be achie ed, wi h
isks, mi iga ions, acili a ing p ocesses and me ics o o e come hem.
We ha e e ised some o ou e minology, o e e o a clea e meaning o ‘da a ecosys ems’, and we
ha e se ou sel es a new in e nal me ic o wha we conside pa ly and ully na ional each o ou
ecosys ems.
Table 2, summa ises he de ailed indings o his epo in ela ion o ou ini ial objec i es and de ails
ou nex s eps o he nex 12 mon hs, based on he s a us o ecosys em de elopmen a each o he
h ee le els i.e. locally, na ionally and Eu opean-wide.
Con en s
1. PUBLISHABLE SUMMARY (MAX ½ PAGE) ................................................................................................. 3
2. OUR STRONG-AYA ECOSYSTEMS – DEFINITIONS AND INTERNAL METRICS .................................................. 5
2.1 WHAT WE HAVE ACHIEVED ON OUR ECOSYSTEMS, IN THE LAST 12 MONTHS ......................................................... 10
3 METHODOLOGY TO ASSESS THE RELIABILITY OF STRONG-AYA OUTCOMES BY ASSESSING DATA QUALITY
AND DATA PROCESSING BY STRONG-AYA SYSTEMS ...................................................................................... 14
3.1 TECHNICAL STANDARDS ............................................................................................................................. 14
3.2 ETHICAL STANDARDS ................................................................................................................................. 14
3.3 STANDARDS AND RULES AROUND DAY-TO-DAY OPERATIONS WITHIN THE ECOSYSTEM ............................................. 15
3.4 RULES ON USING THE ECOSYSTEM FOR FEDERATED LEARNING AND ANALYTICS ....................................................... 15
3.5 KPIS DEFINED .......................................................................................................................................... 15
3.6 MANAGEMENT OF NATIONAL AND INSTITUTIONAL DIFFERENCES ................................................................................ 15
3.7 METHODOLOGY: ...................................................................................................................................... 16
3.7.1 S akeholde consul a ions: .................................................................................................................. 16
3.7.2 S akeholde in e iews and su eys: ................................................................................................... 16
4. THE RESEARCH PRIORITIES FOR OUR ECOSYSTEMS ............................................................................... 25
4. PLANS TO EXPAND OUR ECOSYSTEMS FROM 2025 ONWARDS .............................................................. 25
2. Ou STRONG-AYA ecosys ems – de ini ions and in e nal me ics
STRONG-AYA b ings oge he an in e na ional mul i-disciplina y conso ium ac oss se en Eu opean
coun ies, led by he Ne he lands Cance Ins i u e (NKI) and composed o academic esea ch
o ganisa ions (Eu opean O ganisa ion o Resea ch and T ea men o Cance (EORTC), Uni e si y o
Sou hamp on, Uni e si y o Leeds, Uni e si y o Manches e , Maas ich Uni e si y, Ne he lands
Comp ehensi e Cance O ganisa ion (IKNL)), clinical pa ne s (I alian Na ional Tumou Ins i u e, Léon
Bé a d Cen e, Gus a e Roussy Ins i u e, Ma ia Sklodowska-Cu ie Na ional Resea ch Ins i u e o
Oncology, he Leeds Teaching Hospi als Na ional Heal h Se ice T us ), s akeholde and pa ien
o ganisa ions (You h Cance Eu ope, Eu opean Cance O ganisa ion) and a consul ing company
(FFUND).
The in eg al componen s o ou S ong-AYA ecosys ems a e:
1) An in e -p o essional, in e disciplina y and se ice use communi y, wo king oge he and sha ing
knowledge, ideas, p ocesses and in o ma ion ha mee he o e all pu poses o STRONG-AYA.
2) A se o local da abases
a) To s o e pseudonymised indi idual-le el pa ien da a in a local p i a e eposi o y, o ‘sa e
space’ (o en e med a Secu e Resea ch En i onmen ) wi hin he da a go e nance s uc u e
o each pa ne .
Ou p ima y pu pose is no o g an ex e nal access o hese da a held locally. Speci ic
pieces o s a is ical algo i hms, gene a ed by pa ne s UNIMAAS and IKNL, will summa ise
each se o local da a, and b ing only he agg ega ed o summa y-le el analyses om each
pa ne cen e oge he o ming an o e all analysis.
3) De elop applica ions h ough which local da a manage s will all be able o:
a) P epa e, and make da a FAIR inside hei local ecosys em (so ha hey emain as da a
owne s e hically and legally).
b) Examine hei own da a o moni o comple eness and e alua e da a quali y (a a le el o
de ail ha i s wi h hei pe missions).
4) Tools (such as ‘Apps’) ha can op imise he knowledge gained by us and o he s om ou wo k
o:
a) Run p ede ined analyses au oma ically (‘in eal ime’, ‘on demand’, ‘on he ly’) upon hese
da a.
b) Build AYA-speci ic aspec s, in o ( o example):
i) Exis ing esea ch ques ions (Eu oCa e)
ii) Exis ing pa ien -d i en ques ions ( hei websi es)
iii) Exis ing policy ques ions (ECO)
5) A sophis ica ed web-based so wa e applica ion, which
a) Se es mul iple s akeholde s (e.g. clinicians, pa ien s, policy make s) o mul iple communi ies
o ela ed s akeholde s.
b) P o ides speci ic access o an app op ia e laye o le el o he web space, o each speci ic
indi idual logging in, acco ding o hei own equi emen s and cha ac e is ics.

6) A design and cul u e ha p omo es co-ope a ion and engagemen , o maximise sha ed lea ning.
As he echnical in as uc u e and pe sonnel aking pa a e only o alue alongside he da a hey
hold, we a e conside ing amending ou e minology om ‘ecosys ems’ o ‘da a ecosys ems’. Da a
ecosys ems a ound hei da a a e cu en ly being se up wi hin i e pa icipa ing Eu opean na ions.
Each pa ne has pu in place i s own local ecosys em including people, skill-mix, egula o y and
app o al p ocesses, local e ospec i e da a (o en wi h egional each), and a plan o c ea e i s own
local p ospec i e da a. The i e na ions a e:
• The UK – wi h cen es in Leeds and Manches e
• F ance – wi h cen es in Pa is and Lyon
• I aly – a cen e in Milan
• The Ne he lands – a cen e in Ams e dam
• Poland – a cen e in Wa saw
These a e each aspi ing o ue na ional each. Howe e ‘na ional’ lacks p ecise de ini ion in his
con ex ; much longe -s anding da a sys ems o en do no ha e popula ion-based na ional each, o
many pa ame e s (such as cance s age, ea men , o elapse s a us) and e en less so o pa ame e s
we will collec (such as ca e ecei ed, quali y o li e and symp oms). Ou cu en ini ia i e is unlikely
o apidly achie e popula ion co e age. The e o e, we ha e de ined wha we conside na ional each
o ou na ional ecosys ems, o enable us o map ou p og ess owa ds ha ul ima e goal: In e y
simple ope a ional e ms we conside
- Mo e han i e clinical o popula ion-based da a sou ces wi hin a na ion is ‘na ional’.
- Two o i e is ‘pa ly na ional’.
- One da a sou ce only is ‘local’.
We accep his is an in e im and in e nal me ic o ou sel es, bu we conside i help ul o wo k
agains , o ensu e app op ia e o e all p og ess. Along wi h his s uc u e o de ine wha we eel a
‘na ional da a ecosys em’ is, we ha e also wo ked o de ine a s uc u e ha cha ac e izes local,
na ional and in e na ional da a ecosys ems, o assis us in wo king, s ep by s ep, owa ds na ional and
in e na ional each:
Table 1
Scope Ci y/communi y-
speci ic
Coun y-wide Pan-Eu opean
S akeholde s
Local agencies,
esiden s
Na ional Go e nmen ,
NGOs
Global ins i u ions,
mul ina ional bodies
Da a sou ces
Local da a (eg.
Municipal)
Na ional egis ies,
su eys
C oss-
bo de esea ch,
global da abases
Challenges
add essed
Con ex -speci ic issues
(neighbou hood le el
heal h ends)
Na ional p io i ies (eg
disease p e alence)
Global challenges (eg
pandemic, clima e
change)
Collabo a ion Regional pa ne ships Fede al-s a e
coo dina ion
In e na ional coali ions
Well-de eloped sys ems and discussions o c ea e na ional- each exis ing AYA da a access a e
unde way in he Ne he lands, F ance and he UK. Exis ing na ional AYA-speci ic PRO da a is limi ed o
he Ne he lands (wi h mul icen e na ional co e age) and pa ly na ional in England (wi h 2 cen es
con ibu ing exis ing PRO da a and he na ional egis e p o iding a hi d sou ce o clinical da a om
i s AYA-onse cance ou comes da ase , bu no including PRO da a). P ospec i e da a will also be
pa ly na ional in F ance, wi h PRO da a om wo cen es.
Achie ing na ional each mo e widely is limi ed by:
1. Delayed engagemen o na ional policy-make s o popula ion-based na ional AYA cance
da a, meaning ha da a a ailabili y is based upon da a al uism, which is no as as o
e ec i e as i suppo ed by policy incen i es. We e policy-make s o issue guidance ha all
cen es wi h AYA p ac ices should collec ou comes da a based upon he STRONG_AYA COS,
hen na ional each would be acili a ed o p ospec i e da a. Wo k o achie e his policy
engagemen is ongoing in Ne he lands, F ance and England.
2. Cul u al and p ac ical di e ences in he app oach o da a o a ious ypes. Fo example
di e en pa s o ou conso ium ha e di e en medical cul u es in ela ion o he impo ance
o AYA as a speci ic oncology pa ien g oup, and he impo ance o pa ien epo ed ou comes
in clinical p ac ice.
3. Delayed con i ma ion and e inemen o he Co e Ou come Se o S ong-AYA, esul ing in
a. Limi a ions in he es ing o ecosys ems upon eal AYA da a. Howe e , es s on
dummy da a ha e been en i ely secu e and e ec i e.
b. Limi a ions in he quali y assu ance o he CoS da a held in each loca ion and na ion.
The key c oss-cu ing ac ions o he nex yea o ou na ional ecosys ems a e: (i) o ob ain
e ospec i e da a wi h na ional each, and (ii) o c ea e and es a oadmap and mechanism o
p ospec i e da a wi h na ional each.
Ou pan-Eu opean umb ella ecosys em will include he da a om each o ou 7 local ecosys ems, and
ope a e om he Ne he lands. The p og ess o he na ional ecosys ems is also se ou in he e ised
deli e able 4.4 submi ed Sep embe 2024.
Ou ac ions o demons a e ou ambi ion o achie ing uly na ional each o ou ecosys ems is
summa ised below:
Table 2. Miles ones owa ds na ional ecosys ems
Coun y P og ess Ba ie s Ac ion Timeline Miles one
UK Ag eemen wi h NCRAS o
da a o be sha ed and
applica ion s a ed
Time aken o NCRAS o p ocess
eques s and p o ide da a.
No ag eemen o NCRAS o ha e
hei own Van age 6 hub
Ob ain e ospec i e
epidemiology da a ocusing
on age umou ype and
su i al
Win e 2024/2025
Da ase expo ed om
NCRAS o Manches e o
FL analysis
F ance HORUS and UniAJA
esea ch g an p ocesses
ongoing, o collec AJA-
onse cance ou comes in
mul iple F ench AJA uni s.
The COS in e ms o echnical
easibili y and da a ede a ion and
e alua ion o he accep abili y and
impac will be assessed
wi hin he
imescales and con ex o S ong-
AYA ahead o discussions wi h o he
F ench AYA uni s.
Tes he
easibili y and
accep abili y o he COS
collec ion.
Fu he g an applica ion
(IGR-led)
Sp ing 2025 G an submi ed by IGR
I aly JANE2 launched in Au umn
2024
No na ional AYA o PRO collec ion
in as uc u e, lack o esou ce
Con inue discussions wi hin
JANE2 abou na ional
ede a ed da a
Ongoing
h oughou
p og amme
du a ion
Ne he lands Exis ing in as uc u e is in
place, wi h exis ing na ional
da a
Bu eauc a ic delays due o iling an
amendmen o exis ing s udy o
collec addi ional STRONG AYA co e
ou come se no al eady collec ed as
pa o Du ch COMPRAYA s udy
(an icipa ed Janua y 2025)
E hics amendmen s Win e 2024/5 Da a sha ing con i med in
w i ing o seconda y use in
STRONG-
AYA o exis ing
COMPRAYA and SURVAYA
da ase
Poland Discussion
wi h eam a
Ma ia Sklodowska-Cu ie
Na ional Resea ch Ins i u e
o Oncology.
I is no possible o in eg a e na ional
da a in o he p og amme due o
na ional legal
and IT in as uc u e
cons ain s and a a local le el
Showcase he no el
in eg a ion o he local
PROMs da a wi h he
clinical da a
o p o ide a
Ongoing
h oughou he
p og amme
du a ion.
In eg a ion o exis ing AYA
cance e ili y PRO da a
in o Van age6 Node a
Wa saw
budge s, capabili y and esou ce
capaci y limi a ions. So
only co e
da a om he cen e can be
p o ided p ospec i ely. The e is no
a cul u e in Poland o collec ing and
using pa ien epo ed ou comes in
clinical p ac ice.
empla e o wha is ealis ic
and achie able o o he
cen es o ollow in he
u u e. This could be done
h ough p esen a ions on
S ong-AYA a na ional
con e ences
, lea le s
p omo ing he wo k o
S ong-AYA and co-
ope a ion wi h ad ocacy
and p o essional g oups.
da a can o canno be used o ede a ed lea ning o analyses. The e is an expec a ion ha no all
coun ies and ins i u ions will be able o ully mee all equi emen s ( echnical, adminis a i e e c) and
he e will be gaps in policies. The e hos o a collabo a i e pan-Eu opean ecosys em is ha hese gaps
can be b idged as pa o he wo king p ac ices. A ask wi hin he ecosys em needs o be he
anspa en communica ion and discussion o hese po en ial di e ences and gaps o esol e hem
o o de elop seconda y plans o achie e explici goals.
3.7 Me hodology:
3.7.1 S akeholde consul a ions:
S akeholde consul a ions ha e aken place wi hin he communi y o ou ecosys em o answe any
ques ions and o seek inpu on how o enhance he alue o he ollowing:
Table 4 – S akeholde Consul a ions
S udy aspec S akeholde s consul ed Da e o in e ac ion
Use cases Pa ien ep esen a i es
Heal hca e P o essionals
P ojec Pa ne s
Conso ium membe s
Policy Make s
Resea che s
Decembe 2023 h ough
online su eys
IT and Da a
managemen local
suppo
None equi ed based upon Sep embe
2024 ac ions equi ed.
NA
Da a lows in o he
da a node
NKI
CLB
IGR
UoM
NIO
UoL
INT
Ma ch 2023
Feb ua y 2024
Ap il 2024
May 2024
July 2024
Janua y 2025
To ollow
Heal hca e
P o essional and
Pa ien po als
Heal hca e P o essionals
Pa ien ep esen a i es
Conso ium membe s
Sep embe 2024 h ough an
online wo kshop
E hical guidelines and
code o conduc
S ong-AYA pa ne s
Up o Sep embe 2023 and
ed in o D2.2 submi ed
Sep embe 2023
Table 3. De ails o s akeholde consul a ions on he s a us o local and na ional ecosys ems o D4.9.
3.7.2 S akeholde in e iews and su eys:
Ecosys em cen es we e p o ided wi h a ques ionnai e and ollowed up wi h a i ual mee ing o
p o ide a comp ehensi e o e iew o he p og ess ha has been achie ed in he pas 12 mon hs and

o discuss he ba ie s and challenges s ill p esen . The ques ionnai e and discussions ocused on he
ollowing ques ions:
1. Do you ha e he ele an , co ec and e hically app o ed consen s in place in you
o ganisa ion o he ecosys em?
2. Wha ype o cul u al/language based challenges ha e you iden i ied o people accessing
in o ma ion abou S ong-AYA?
3. The aim is o ha e e ospec i e da a a ailable in he ecosys ems by he end o Sep embe
2024. Has his da a been iden i ied and eady o be made a ailable o S ong-AYA?
4. Has he elec onic loca ion whe e he da a you collec will be s o ed been se up? Is his
a ailable o da a o be inpu ?
5. Do you ha e he ele an people in place o manage he ecosys em – da a mange s, echnical
s a ?
6. Do you ha e he s a in place o ec ui new pa ien s o he PRO’s and ha e you iden i ied
whe e you will ec ui he pa ien s om?
7. Ha e local consen o ms o ec ui he PRO pa ien s been d a ed o app o ed?
8. Do you ha e pa ien in o ma ion shee s a ailable o pa ien s abou he s udy?
9. Wha ac ions do you belie e a e ou s anding o ha e he bes local ecosys em in place?
10. Do you belie e you a e lacking any skills o capaci y o se up he ecosys em?
11. Wha isks o delay o non-comple ion can you see locally, ha migh be ele an o S ong-
AYA and do you ha e mi iga ion plans in place?
Based upon he ques ionnai es, a summa y o esponses has been abula ed o p o ides an o e iew
o he miles ones achie ed ac oss he cen es owa ds achie ing he h ee le els o ecosys em (local,
na ional and in e na ional). This is de ailed below and includes he nex s eps equi ed which will o m
he basis o he ac ions ha will be epo ed on in D4.10.
Table 5 – De ails o cen e-speci ic miles ones achie ed in he pas 12 mon hs
Ecosys e
m
pa ne
E hical
app o als
e ospec i
e da a
E hical
app o als
p ospec i
e da a
In as uc u e
ag eemen
A ailabili y
o
e ospec i
e da a in
da a node
Resea ch
s a
capaci y
Da a
node
a ailable
Dedica ed IT
ha dwa e
IT S a Ou s anding
asks and
me hods
Lead and
Timelines
Lyon No
e ospec i
e PRO
da a so
e hical
app o als
no needed
Awai s he
comple ed
CoS
T ansla io
n
The da a
p ocessing
ag eemen is
being
ci cula ed a
p esen .
No
e ospec i
e PRO da a
a ailable.
Iden i ied
ha mo e
s a a e
needed o
en e he
da a. AYA
nu ses a e
a ailable
Van age6
node has
been
connec e
d o he
cen al
Van age6
se e a
Medical
Da a
Wo ks
A dedica ed
se e has
been
iden i ied
wi h suppo
a
ailable and
up o da e in
e ms o IT
secu i y
s anda ds.
P ojec
Manage s
a e in
place.
Pa ien
in o ma ion
shee s need o
be made
a ailable in
he local
language.
E hics
applica ion o
p ospec i e
PROs.
Ques ionnai e
s and P o ocol
need o be
submi ed in
local
language.
No PRO
collec ion
solu ion
cu en ly in
clinical use in
AYA – will use
an exis ing
local in-house
pla o m o
da a
collec ion.
PIS
expec ed
o be in
d a in
Win e
2024/25
Ecosys e
m
pa ne
E hical
app o als
e ospec i
e da a
E hical
app o als
p ospec i
e da a
In as uc u e
ag eemen
A ailabili y
o
e ospec i
e da a in
da a node
Resea ch
s a
capaci y
Da a
node
a ailable
Dedica ed IT
ha dwa e
IT S a Ou s anding
asks and
me hods
Lead and
Timelines
Ins i u o
nazional
e dei
umo i
Mee ing
wi h he
DPO ha e
been
conduc ed
and
ag eemen
s se o he
p ojec .
Awai s he
CoS
ansla ion
The da a
p ocessing
ag eemen is
being
ci cula ed a
p esen .
No
e ospec i
e PRO da a
is a ailable.
PRO da a
will no be
collec ed
p ospec i e
ly.
No new
s a ha e
been
ec ui ed
un il now
ha he
COS is
de ined.
No a
p esen .
Clinical da a
collec ion will
be pe o med
in RedCap
and
anscoded in
OMPO an
in e nal
se e .
S a a e
no in
place and
has been
iden i ied
as an
ou s andi
ng ac ion.
IT and
human
esou ces
s a a e
needed a
clinical and IT
le el.
S a
ec ui me
n
expec ed
Da a
manage
s a ing o
wo k om
Janua y
2025
Gus a e
Roussy
IRB
app o al
has been
ob ained
howe e
DPO needs
inal COS o
implemen
he da a.
No.
Canno
p og ess
wi hou
he COS
ansla ion
and lis o
co-
a iables.
This is now
in place
(Decembe
2024) bu
wo k
The da a
p ocessing
ag eemen is
being
ci cula ed a
p esen .
Some
e ospec i
e da a has
been
iden i ied
bu inal
COS is
needed o
u he
p og ess
A clinical
esea ch
associa e
has been
ec ui ed
o 24
mon hs o
consen he
pa ien s
Van age6
node has
been
connec e
d o he
cen al
Van age6
se e a
Medical
Da a
Wo ks
A dedica ed
se e has
been
iden i ied
wi h suppo
a ailable and
up o da e in
e ms o IT
secu i y
s anda ds.
IT eams
a e in
place o
ex ac
clinical
da a i ems
au oma ic
ally.
Quali y
checked
will be
comple e
d by a
Pa ien
in o ma ion
shee s need
o be made
a ailable in
he local
language.
Ob aining
CPP app o al
o he
p ospec i e
da a
collec ion
PIS
expec ed
in Sp ing
2025
ollowing i
is delayed
Da a
Manage .
The e is a
lack o an
exis ing
echnical
in as uc u
e o collec
he PRO
da a. A
pla o m
exis s o
collec
b eas
cance da a
which may
be
adap able. A
new
pla o m will
be cos ly and
will equi e
subs an ial
esou ce o
se up.
Wa saw
Yes he
consen s
a e in place
o he
e ospec i
e sex-
No. E hics
app o al
can no be
applied o
un il he
COS is in
The da a
p ocessing
ag eemen is
being
ci cula ed a
p esen .
Sou ce da a
has been
iden i ied.
Two clinics
ha e been
iden i ied
om which
o ec ui
pa ien s.
S a a e in
Van age6
node has
been
connec e
d o he
cen al
Van age6
Need o
es a
blish a
secu e
esea ch da a
en i onmen
o pu he
local da a.
S a a e
in place a
p esen o
manage
he
ecosys e
m. The e
Pa ien
in o ma ion
shee s and
ques ionnai
e need o be
made
a ailabl
e in
E hical
app o al is
being
applied o
as COS is in
place –
heal h
p ojec .
he local
language.
place o do
his.
se e a
Medical
Da a
Wo ks
is no
budge o
sus ain
he
ecosys e
m a e
he
p ojec
ends
he local
language.
Suppo is
equi es
om he
wide
conso ium’s
expe ise o
collec he
da a in a e y
speci ic
s uc u e
NKI
Yes he
consen s
a e in place
and da a
has s a ed
o be
mo ed in o
he S ong-
AYA node.
The
applica ion
was sen in
July 2024.
The MDW
ag eemen
has been
signed. The
da a
p ocessing
ag eemen is
being
ci cula ed a
p esen o all
pa ies o sign.
Re ospec i
e da a
om
COMPRAYA
and
SURVAYA
ha e been
iden i ied
and wo k
has s a ed
o mo e
COMPRAYA
da a in o
he node
Access o
pa ien s is
in place due
o he
COMPRAYA
s udy.
Applying o
seconda y
use o he
COMPRAYA
da a o he
p ospec i e
pa ien s.
Van age6
node has
been
connec e
d o he
cen al
Van age6
se e a
Medical
Da a
Wo ks
Yes a se e
has been
iden i ied.
Howe e a
dedica ed
se e is
being
sou ced o
he longe
e m.
All s a in
place
excep a
Da a
Manage
who will
be
ec ui ed
imminen l
y.
Submi
amendmen
o
e ospec i
e da a o
include
p ospec i e
da a.
D a Pa ien
In o ma ion
Shee s
Seek long-
e m se e
solu ion o
FL p ojec s.
Since he
COS is
de ined
Decembe
2024 his
is nea ing
comple io
n
Ea ly 2025
No
a ailable
imeline

Rec ui A
Da a
Manage
Add da a o
lakehouse a
and ensu e
he da a is
made FAIR o
in e ope abili
y
Ea ly 2025
Ea ly 2025
The
Ch is ie
No ye ,
UNIMASS
a e in
discussions
abou he
me ada a
s uc u e.
The wo k
is being led
by UoL and
is ongoing.
The
in as uc u e
is al eady in
place and has
been used on
ano he
ede a ed
da a analysis
p ojec
p e iously.
The da a
p ocessing
ag eemen is
being
ci cula ed a
p esen .
The
e ospec i
e da a has
no ye
been made
a ailable.
Discussions
a e ongoing
wi h
UNIMASS.
Da a
Manage s
a e in place
howe e
s a o
ec ui
pa ien s will
be pu in
pos when
he HRA
app o al
has been
g an ed.
Van age6
node has
been
connec e
d o he
cen al
Van age6
se e a
Medical
Da a
Wo ks
An exis ing
UKCAT
in as uc u e
is in place.
IT s a a e
in pos .
HRA
app o al has
no been
gi en ye o
he
p ospec i e
da a
collec ion.
Na ional
Da a
ecosys em
ongoing
discussions.
Rec ui me
n will be
in place
once HRA
app o al
gi en
HRA
app o al
awai ed
Janua y
2025
Sep embe
2027
Uni e si
y o
Leeds
The
e ospec i
e clinical
Wo k is
ongoing o
inalise he
The da a
p ocessing
ag eemen is
The
e ospec i
e da a is
The s a
a e all in
place o
Van age6
node
ins alled
Dedica ed
IT s a a e
in place.
A manual
check o he
e ospec i
HRA
app o al is
expec ed
da a has
he
app o als
in place and
he
e ospec i
e PRO
da a is
being
indi idually
checked o
ensu e
seconda y
use o da a
pe mission
has been
gi en.
documen
a ion
needed o
submi he
UK-speci ic
e hics
applica ion
. Sponso
app o al
sough ,
and
commen s
esponded
o
Sep embe
2024.
Some
elemen s
a e
ou s andin
g o he
ele an
app o als
awai ing
he inal
CoS
being
ci cula ed a
p esen .
no
a ailable in
he node
howe e
he
e ospec i
e da a has
been
iden i ied
and wo k is
unde way
o mo e i
ac oss.
he
manageme
n o he
ecosys ems
and he
ec ui new
pa ien s.
Janua y
2025
e PRO
s udies o
ensu e e hics
app o al
p esen o
seconda y
use o he
da a.
E hics
app o al o
p ospec i e
da a
collec ion.
The inal
mig a ion o
he TRE
se e .
Fu he
in es iga ion
in o
how o
each less
well se ed
popula ions
h ough
ansla ed
ques ionnai
es and
a ailabili y in
al e na e
o ma s
in Janua y
2025
Table 6 In as uc u e s a us upda e
Gus a e
Roussy
Cen e
Leon
Be a d
Ins i u o
nazionale
dei umo i
Uni e si y o Leeds
The Ch is ie
Hospi al
Manches e
Ne he lands
Cance
Ins i u e
Na odowy
Ins y u
Onkologii
Na ion
F ance I aly UK
Ne he lands Poland
Da a s a ion c ea ed
Expec ed
2025
Se ice use ag eemen wi h
secu e connec i i y p o ide
(Medical Da a Wo ks)
Expec ed
2025
Tes ed end- o-end enc yp ed
ede a ed que y
Expec ed
2025
Tes ed connec i i y wi h
secu e connec i i y p o ide
passed
Expec ed
2025
Tes ed
in e ope abili y/FAIRi ica ion
ool unc ionali y
Expec ed
2025
Table 6. Technological in as uc u e s a us a na ional le els, building owa ds a pan-Eu opean in as uc u e.
25
4. The Resea ch P io i ies o ou ecosys ems
Key ques ions ha pa icipan s wish o use he S ong-AYA da a o we e iden i ied du ing he ini ial
consul a ions du ing 2023. These esea ch p io i ies ha e p og essed o o m he ini ial Use Cases.
The op h ee use cases ha e been iden i ied as:
1. Wha p opo ion o AYA pa ien s had a Mul i-Disciplina y Team clinical e alua ion o hei case p io o
commencing clinical ea men /managemen
2. Did he pa ien expe ience psychological p oblems du ing and a e ea men ?
3. Wha p opo ion o AYA cance pa ien s su i e a 1, 3, 5 yea s pos - ea men ?
The me hods and p ocesses used o es ablish he use cases we e ou lined p e iously (Deli e able 4.8.). In he
nex 12 mon hs, wi h WP2, we p opose o es hese and o he use cases agains no el e hical da a
amewo ks, o ensu e ou wo k is deli e ed wi h op imal p oac i e conside a ion o da a secu i y and e hical
pi alls.
5. Plans o expand ou ecosys ems om 2025 onwa ds
The Cance Mission 01-05 call was o su i o ship esea ch when cance is diagnosed in AYA aged 15-39
yea s. Two p oposals we e submi ed led by STRONG-AYA bene icia ies, which included c ea ing new
da ase s o use wi hin he S ong-AYA ecosys em. These applica ions o he call would seek o build upon
and expand he exis ing STRONG AYA