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Report
2012 · 2015
GETHI
LETTER FROM THE PRESIDENT 4
ABOUT GETHI 6 Mission and vision 8 Objectives 9
STRUCTURE Board of Directors 10 Work groups 11
ACTIVITY REPORT 12 Research 13 •Clinicaltrials 13 •Tumourregistry 14 Scientificdissemination 16 •Magazines 16 •Guidesandmanuals 16 •Scientificarticles 17 •Communicationatconferences 18 •PosterSessions 18 Training 19 •Conferencesandmeetings 19 •Grants 20 •Apps 21
COMMUNICATION 22 Website 22 Socialnetworks 22 GETHIinthemedia 23
Index Report2012 · 2015
GETHI
Report2012 · 2015
GETHILETTER FROM THE PRESIDENT
04 05
Through Directive 24/2011, the European CommissionurgedthememberstatesoftheEuropeanUniontodevelopReferenceNetworks,with the aimof improving the careand quality of life of patients with rare diseases and, byextension, those with rare tumours. The first objectiveoftheReferenceNetworksistoconnectthemosthighlyqualifiedprofessionalswithSpecialisedReferenceCentres,thereby achieving a concentrationof knowledge in thoseareaswhereresourcesarescarce.
This idea inspiredthecreationoftheSpanishTaskForceGroupforOrphanandInfrequentTumours(GETHI),whichwasfoundedinFebruary2012thankstothehelpandsupportoftheSpanishSocietyofMedicalOncology(SEOM).Sincethen,ourgrouphaspromotedtheparticipationandcollaborationofprofessionalsworkinginclinicalpractice,epidemiologyandbasiccancerresearch,thuscreatinganetworktodriveclinicalresearch,toshareinformationandexperiencesthroughtheregistriesofraretumoursand,aboveall,tobeabletoofferourpatientsbettercare.
It is for this reason that, as current President of GETHI, I would first like toacknowledgetheworkcarriedoutbythepreviousteam,andespeciallyDr.EnriqueGrandeasmotivatorof thegroup;hewastheonewhoset itupandgotusonboardwiththeideathatitisnecessaryforustoknoweachotherandtoshareourknowledge.
During these three yearsof existence,wehave focusedourworkon increasingthenumberofspecialistswhosemedicalpracticeworkisrelatedtosometypeofinfrequentneoplasm.Therefore,ourinitialobjectivewastoestablishnetworksofexpertspecialistsatanational level,whichwouldprovideuswith fasterwaysofcommunicatingwitheachotherandwouldbreakdownthegeographical,knowledgeandexperiencebarriers,which isthemainconcernofthepatientwhohasbeendiagnosedwithararecancerandgoesinhopetotheironcologist.
Atthesametime,scientificresearchintothesetypesoftumoursandthetrainingofprofessionalsinterestedinthisareahasbeen,andcontinuestobe,theGroup’smainpriority.
Throughopinionforums,workgroups,publicationsandprofessionalmeetingswewanttorespondtotherealityofOncologyofOrphanandInfrequentTumoursandtomeetthenewchallengesthatemergeinthetreatmentandresearchofthesame,whichwillresultinbetterpatientcare.
Wehavealreadycreatedvariousregistriesofraretumourfamilies–thyroid,bronchialcarcinoid, intestinal neuroendocrine– and registries of other families are in theprojectphase.Weareworkingcloselywithothercooperativegroupswhich,fromanotherperspective, have similar registries, such as the SpanishNeuroendocrineTumourGroup(GETNE)andtheSpanishSarcomaResearchGroup(GEIS).Let’snotforgetthat,intheareaofresearch,importantclinicaltrialshavealreadybeenconducted which clearly demonstrate a before and after in the treatment ofinfrequenttumours.
Ouractivityisdefinedbythefuture.Apatientdiagnosedwithaninfrequenttumourshouldnothavetoexperiencethesenseofisolationcausedwheninformedoftherarityoftheirdisease.Theoncologistattendingthepatientmustconveythat,inthecontextofanextensivenetworkofexpertspecialiststherareorinfrequenttumourceasestobeso.
GETHIhasgreatfutureprospects,bothintermsoftheprogressiveexpansionofournetworkofcontactsandtheinterestgeneratedinestablishingepidemiologicaland clinical research projects. I therefore encourage all interestedmembers andspecialists to participate actively in GETHI in order to achieve the objectivesproposedatthebeginningofthisletter.
Ramón de las Peñas PresidentofGETHI
Report2012 · 2015
GETHIABOUT GETHI
06 07
Raretumourspresentachallengeinthedailypracticeofmedicalprofessionalsfromadiagnosticandtherapeuticpointofview.Despitebeingconsideredthethirdorfourthmostcommontumourintermsofincidence,andthefactthattheyaccountforaround20%ofallsolidtumours,theseneoplasmsarediagnosedseparately in fewerthan5casesper100,000peopleeachyear.Thismeansthatprofessionalsrarelycomeacrossthesediseasesintheirdailyworkandthatpatientswhosufferfromthemoftenfeelisolated.
The Spanish Task Force Group for Orphan and Infrequent Tumours(GETHI)wasestablishedon9February2012withtheaimofpromotingbasic,translationalandclinicalresearchintoraretumoursandofcreatinganetworktosupporttheworkofoncologyprofessionalsinthisfield.
GETHIcurrentlyhas132members,themajorityofwhomaremedicaloncologyspecialists,from78Spanishhospitalsandresearchcentres.
“Research into rare tumours is not only a moral duty, but also a unique source of knowledge that will benefit
the whole of society”
GETHImembersbyautonomouscommunity
Report2012 · 2015
GETHIABOUT GETHI
08 09
ObjectivesTo create a national network of professionals that will enable medicaloncologyprofessionals to access the information theyneed about infrequentneoplasms in apersonal, simple and completewaywithouthaving to consultforeignregistries.
Toserveasabridgeandtoprovidesupportinthecollaborationwiththevariouscooperativegroupsworkinginthefieldofneoplasmsinwhichtherearerareorinfrequentvariants,promotingthemutualenrichmentofthegroupsforthebenefitofpatients.
To quantify the impact of rare tumours in Spain, using population-basedregistriesthatofferreal,qualitydataonincidenceinSpain.
Totrainspecialistsinraretumours,whocanpromotebasic,translationalandclinicalresearchinthefuture.
Todrawuptreatmentguidelinesandclinicalpracticeprotocolsthatenableprofessionalstooffergreaterqualityofcaretopatients.
Tosupportresearchandaccesstonewtreatments,as theprincipal lobbygroupformedbyexpertsinraretumoursinSpain.
Topromotestrategicpartnershipswithscientificinstitutionsandcompaniesfocused on studying and raising awareness about rare diseases, in order tocombineoureffortsinthefightagainstthesepathologies.
MissionandvisionGETHIseekstoachieveaqualitativeleapintheapproachandresearchintoorphanandinfrequenttumours.Throughthepromotionoftrainingactivities,conducting own and collaborative research and the creation of networks ofprofessionalsinraretumours,GETHIaimstocontributedirectlytoenriching scientificknowledgeandtotheexpertiseofourprofessionalstobeabletooffer greaterqualitycaretopatients.
We aspire to be a scientificgroupofreferenceforinfrequentneoplasms,bothinSpainandabroad;agroupthatcanprovideprofessionalswiththesupport,resourcesandtoolstheyneed,aswellasinvolvetheminthiscommonprojectaimedatmakingraretumoursincreasinglylessunknown.
Wearecertainthattheeffortsofallofuswhostrivetogaingroundonthesetumourswillonedaychangethehistoryofcancer.
Report2012 · 2015
GETHISTRUCTURE
10 11
BoardofDirectors2015-2018
Dr. Juan Antonio VirizuelaH.U.VirgendeMacarena
Member
Dr. Ramón de las PeñasConsorcioHospitalarioProvincialdeCastellón
President
Dr. Martín LázaroComplexoHospitalarioUniversitariodeVigo
Vice-President
Dra. Núria RodríguezHospitalUniversitarioLaPaz
Secretary
Dr. Jesús García-DonasCentroIntegralOncológicoClaraCampal
Treasurer
Dr. Enrique GrandeH.U.RamónyCajal
Member
Dr. Jaume CapdevilaH.U.Valld´Hebrón
Member
Dr. Carlos LópezH.U.MarquésdeValdecilla
Member
Dr. Federico LongoHospitalRamónyCajal
Member
Workgroups
TUMOUR
Pheochromocytoma/Paraganglioma
AdrenocorticalCarcinoma
Non-GliomaBrainTumours
Non-MelanomaSkinTumours
Thymoma
ThyroidTumours
EyeTumours
RareHeadandNeckTumours
Children’sTumoursinAdults(Wilms,Medulloblastoma,PNET)
RareSarcomas
Sarcomas/NeuroendocrineTumours
TumoursofUnknownOrigin
Othertumours
GETHI Activities
19 % 19 %11 % 5 % 3 % 5 %8 %16 % 14 %
Scientificarticles Registryoftumours Apps
Communicationstoconferences Meetings and conferences Journals
Clinicaltrials Grants Guidesandmanuals
Report2012 · 2015
GETHIACTIVITYREPORT2012-2015
12 13
PatientswithinfrequenttumoursarethemainfocusofGETHI’sactivity.Research,scientific dissemination and training of professionals are the key instrumentsforcontributing to improving theoutlookandcareofpatientsand thereforeconstitutethemainpillarsonwhichtheGroup’sworkisfounded.
Sinceitscreationin2012,GETHIhasimplementedover25researchandtrainingprojectsandhashelpedincreaseknowledgeaboutthesetypesoftumoursthroughthecreationofthejournalUncommon Oncology,thepublicationofvariousguidesandmanuals,andbywritingordirectlycontributingtoseveralscientificarticles
Areasofactivity
38 %
30 %
32 %
PUBLICA
TION
S
RESEA
RCH
TRA
ININ
G
ResearchCLINICAL TRIALS
Greko I: Ketoconazole in the treatment ofmetastatic ovariangranulosa-cellcarcinoma
The aim of this trial was to study the benefits of Ketoconazole inthe treatment of ovarian granulosa-cell carcinomas, in order to beable tooffer an alternative therapywith lower toxicity. Greco I isthefirstattemptattreatingovariangranulosa-cellcancerwithasolidmolecularrationale.
Greco II:Orteronel inmetastaticoradvancednon-respectableovariangranulosa-celltumours
Themainobjectiveofthistrialistoevaluatetheclinicalbenefitrateand to determine the toxicity profile of Orteronel in metastaticovariangranulosa-celltumours.
Molecularalterationsinoligodendroglialtumours
This trial involves studying the underlying molecular changes inoligodendroglialbraintumours,inordertounderstandthemechanismsof evolution between these types of tumours and to find effectivetherapeutictreatmenttargetsforthisorphanpathology.
GrekoIII:Enzalutamideinovariangranulosa-celltumours
TheobjectiveofGrekoIIIistogatherscientificevidenceofthepotentialofEnzalutamideinthetreatmentofovariangranulosa-cellcancer.Thestudyisthereforefocusedonevaluatingtheoverallresponserateofpatients,establishingtheclinicalbenefitanddeterminingthetoxicitylevelofthedrug.
PI: Jesús García Donas, CIOCC
PI: Jesús García Donas, CIOCC
PI: Jesús García Donas, CIOCC
PI: María Ángeles Vaz, H.U. Ramón y Cajal
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GETHIACTIVITYREPORT2012-2015
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ResearchThe Pembro-rare trial: A multi-centre phase II study ofPembrolizumabinpatientswithrarecancers
ThisisthefirstclinicaltrialinPhaseIIofthecompoundPembrolizumabinraretumours,wheremolecularresearchiscarriedoutinordertoidentifywhichcasesaremostlikelytobenefitfromthistherapy.
Pembrolizumab maintenance after first-line chemotherapytreatmentforCancerofUnknownPrimary(CUP),aphaseIItrialconductedbyGETHI
This clinical trial is aimed at studying Pembrolizumab maintenanceafterthefirstlineofchemotherapytreatmentforCancerofUnknownPrimary(CUP).ItalsoaimstopredicttoxicityandtoincreasethetotalresponserateinpatientsbeingtreatedwithPembrolizumab
TUMOUR REGISTRY
Registryofbronchialcarcinoids
Thisregistryfavourstheexchangeofexperienceswiththerapeuticsolutionsusedbyprofessionalsinbronchialcarcinoids,inordertopromotetheestablishmentofconsensusguidelinesaimedatstandardisingtreatments.
MedullaryThyroidCarcinoma
Atnationallevel,thisregistrywascreatedtoincludethemaximumnumberofcasesofmedullarythyroidcarcinoma,regardlessoftheirstage,thetreatmentsusedorthemolecular-geneticstateofthetumour.
Differentiated/undifferentiatedradioiodine-refractorythyroidcarcinoma
Thisnationwideregistrycanincludeallcasesofdifferentiated/undifferentiatedthyroidcarcinomaswhichhavedemonstratedrefractorinesstotreatmentwithradioactive isotope
GETHI-TOD-DATABASE
Thisproject,whichiscurrently inthedevelopmentstage, isaimedatcreatinga registry of tumours of unknown origin at a national level, and centralisedwithin theGETHIgroup. Theobjective is to includeclinical andpathologicalcharacteristicsinordertoacquireabetterknowledgeofdescriptivestatisticsandoftheprognosisandtreatmentoftumoursoforigin.
PI: Federico Longo, H.U. Ramón y Cajal
PI: Xabier Mielgo, H. Fundación de Alcorcón
Report2012 · 2015
GETHIACTIVITYREPORT2012-2015
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ScientificdisseminationJOURNALS
Uncommon OncologyThe journalUncommon Oncology, sponsored byGETHI,was presented at the“OncologyDiscussionForum2012”asadisseminationtoolforraretumourswithinfrequentevolution.
EditedbyDr.JavierMartínezTruferoandDr.AntonioAntónTorres,itincludesreviewarticlesandclinicalcasestudiesonthetreatmentappliedanditsresults.Atotalofsevenissuesof Uncommon Oncologyhavebeenpublishedtodate.
BOOKSANDMANUALS
Guidelines for the therapeutic management of Caprelsa in advancedmedullarythyroidcancerTheaimofthisguideistosummarisetheinformationpublishedontheadverseeffectsassociatedwithVandetanibtherapyinadvancedmedullarythyroidcancer,andtoprovidedoctorswithpracticalguidelinesregardingeducation,monitoringandmanagementofthetoxicitiesinducedinpatientsundergoingthistreatment.
TreatiseonRareTumoursThe numberof rare tumours diagnosed is expected to continue to increaseover thecomingyears. It is thereforeessential tohaveaspecificknowledgeofthephysiologyoftheorgansinwhichtheyoccur.Thistreatisereflectstheneedtoincludeinasingleworktheparticularitiesofthetreatmentofthemaininfrequentneoplasms.
GETHImonographofParaneoplasticSyndromesParaneoplastic Syndromes occur before or during the development of theneoplasm. When they appear during the development stage, both clinicalmonitoringandthedetectionofproteinsorantibodiescanbeusedastumourmarkers for the course of the primary neoplasm. In thismonograph,GETHIpromotesareviewoftheseprocessescarriedoutbyspecialistsinvolvedinthediagnosisandmonitoringofthesame.
SCIENTIFIC ARTICLES
•Garcia-Donas J, Hurtado A, García-Casado Z, Albareda J, López-Guerrero JA, Alemany I, Grande E, Camara JC, Hernando S. CytochromeP17InhibitionWithKetoconazoleAsTreatmentforAdvancedGranulosaCellOvarianTumor. J Clin Oncol. 2013 Apr 1; 31(10):e165-6
•Grande E, Capdevila J, Díez JJ, Longo F, Carrato A. Asignificantresponsetosunitinibinapatientwithanaplasticthyroidcarcinoma.J Res Med Sci. 2013 Jul; 18(7):623-5
•Grande E, Kreissl MC, Filetti S, Newbold K, Reinisch W, Robert C, Schlumberger M, Tolstrup LK, Zamorano JL, Capdevila J. Vandetanibinadvancedmedullarythyroidcancer:reviewofadverseeventmanagementstrategies. Adv Ther. 2013 Nov; 30(11):945-66
•Gatta G, Mallone S, van der Zwan JM, Trama A, Siesling S, Capocaccia R; EUROCARE Working Group. CancerprevalenceestimatesinEuropeatthebeginningof2000. Ann Oncol. 2013 Jun; 24(6):1660-6
•Prieto I, Pérez de la Fuente T, Medina S, Castelo B, Sobrino B, Fortes J, Esteban D, Cassinello F, Jover R, Rodríguez N. Merkel cell carcinoma: an algorithm formultidisciplinarymanagementanddecision-making. Critical Reviews in Oncology/Hematology (in press)
Report2012 · 2015
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ScientificdisseminationCOMMUNICATION AT CONFERENCES
ASCO 2014 (Abstract #130461)• García-Donas, J. Ketoconazole as inhibitor of the enzyme CYP17 in locally advanced
or disseminated granulosa cell tumors of the ovary. The GreKo I study (gethi 11-03).
POSTER SESSIONS
• ASCO 2014Hurtado Nuño, A. Open-labelphaseIIclinicaltrialofOrteronel(TAK-700)inmetastaticoradvancednonresectablegranulosacellovariantumors:TheGreKoIIstudy. Citation: J Clin Oncol 32:5s, 2014 (suppl; abstr TPS5626)
• ESMO 2014 (Abstract #7255)
Grande, E. SafetyandefficacyofVandetanibassystemictreatmentforpatientswithadvancedandprogressiveMedullaryThyroidCancer(MTC).
• SEOM XIV National Medical Oncology Meeting 2014 (Poster Session 188-PD).
Hurtado Nuño, A. OpenphaseIIstudyofKetoconazoleasinhibitoroftheenzymeCYP17 in locally advancedor disseminated granulosa-cell tumours of the ovary.GreKostudy.
TrainingCONFERENCES AND MEETINGS
MedullaryThyroidCancerExpertMeeting
With the aim of discussing and establishing an international multidisciplinaryconsensusonthetreatmentofpatientswithadvancedmedullarythyroidcancer,in October 2012 GETHI organised the“MedullaryThyroid Cancer ExpertMeeting”,whichbroughttogetherspecialistsfromdifferentdisciplines.
SymposiumofRareTumours:Practicalconcepts
Althoughmultidisciplinary teams are usual in Spain’s hospitals, this situation istrulyexceptionalwhenitcomestoraretumours.
The symposium involved the creation of a meeting point for professionalsinterestedinorphanandinfrequenttumours.Theflowofinformationgeneratedthroughtheexchangeofexperienceshas,withoutadoubt,contributedtounifyingthetreatmentcriteriafortheseneoplasms.
GETHIAfterASCO2014
EverymedicaloncologyprofessionalisawareoftheimportanceofthemeetingoftheAmericanSocietyofClinicalOncology(ASCO),whichannuallypresentsthemainmilestonesincancerresearch.
In2014,GETHIorganisedthisseminartoupdateknowledgeonthenewdevelopmentspresentedatASCOwithregardtoraretumours.Theseminaraddressedraretumourspecialitiesandover200abstractswerereceived.
Report2012 · 2015
GETHIACTIVITYREPORT2012-2015
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TrainingRESEARCH GRANTS
IncollaborationwiththeFundaciónConsorcioHospitalProvincialdeCastellón,in2013theGroupestablishedtheirfirstgrantprogramme“GETHI–RamóndelasPeñasdeAyudaalaInvestigaciónenTumoursHuérfanoseInfrecuentes”.
Thegrantprogramme,asecondeditionofwhichhasbeenconvenedfor2015,wascreatedaspartof theGroup’s strategy topromote thedevelopmentofresearch projects that benefit the progress of clinical therapy and increaseknowledgeaboutthesetumours.
INTERVIEW
Q.Ingeneralterms,whatistheaimandraisond’êtreofyourproject?Westudywhichmechanismsareinvolvedintheunderlyingmolecularchangesinoligodendroglialtumoursandwelookforavenuesforthedevelopmentofnewdrugs.
Q. HowhastheGETHIgranthelpedthedevelopmentoftheproject?Researchfundingiskeytoscientificadvancesinthesetypesoftumours.WithoutGETHI’shelp,astudylikethiswouldhavebeenverydifficulttocarryout.
Q.Inyouropinion,whatrolecanGETHIplayinSpanishoncology? TheGroupobviouslyplaysafundamentalroleinthedevelopmentofresearchprojects,inpromotingtrainingandinthedisseminationofinformationaboutraretumours.Ithinkthatithasestablishedaveryimportantmeetingpointforthedifferentspecialistswhoworkinthisfield.
APPS
MTC
Medullarythyroidcancerisresponsiblefor13.4%ofdeathscausedbythistypeoftumour.Forthisreason,GETHIbelievesitessentialtoprovidethesetreatmentguidelinesinappformat,explainingthegeneralguidelinestofollowwhenmanagingMTCandusingVandetanibasatreatment.
TreatiseonRareTumours
The consensus document drawn up by the Group served as a basis for thecreationofthisapp,whichoffersinaquickandintuitivewaythekeysforbetterunderstandingtheparticularitiesinvolvedintreatingraretumours.
GIST
Thisapplicationoffersaprotocol for thetreatmentofgastrointestinal stromaltumours(GIST).Thesetumoursarerarecancersthatoriginate fromtheCajalcells,whicharethecellsresponsible for initiatingtherhythmicmovementthatpushesfoodthroughthedigestivetract.
Dra. Mª Ángeles VazWinner of the GETHI-Ramón de las Peñas 2013 grant
“Without GETHI’s help, a study like this would have been
very difficult to carry out.”
Report2012 · 2015
GETHIACTIVITYREPORT2012-2015
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CommunicationSharingourchallenges,hopesandachievementsviathedifferentcommunicationchannelshasopenedupnewdoorsforustoaworldofpossibilities,aworldinwhich,thankstothecollaborationofallthosewhobelieveinusandsupportourwork,wearegrowingdaybydayandgaininggroundonraretumours.
WEBSITE
On the GETHI website (www.gethi.org) we provide information about theGroupand its training, socialandresearchactivities,aswellasresourcesandusefultoolsforpatientsorprofessionals,suchastreatmentguidelinesandapps.
Intheprivateareaofthewebsite,GETHImemberscanalsoaccesstheregistries,inwhichtheycanshareandconsultinformationaboutcasesofraretumours
SOCIALNETWORKS
GETHIiswellawareoftheimportanceofsocialnetworksfordisseminationanddiscussionforumsandthereforehasaTwitteraccount:@GrupoGethi.Todate,theGrouphaspublished3,800tweetsandhasmorethan4,900followers.
GETHI IN THE MEDIA
www
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