D4.9 - First annual report on the progress and success of ecosystems

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