Registration of Cancer in ChildrenNordic Collaboration

Childhood Cancer - two sides of the coin

CONFERENCE IN NORDIC COLLABORATION ON REGISTRIES 2017

8 November 2017, Radisson Blue Sky City, Arlanda Airport

Mats HeymanConsultant Paediatric Oncologist, Karolinska University Hospital

Associate Professor Paediatric Oncology, Karolinska InsitutetData-manager, National Quality Registry of Childhood Cancer (Sweden)

Data-manager, NOPHO-registry

General improvement in the prognosis ofchildren with cancer

How was this improvement achieved?

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Improvement-modelPaediatric Oncology ”Protocol Thinking” (”The Good Circle”)

Protocol(Plan)

Treatment(Do)

Register(Study)

Analyse(Act)

Cooperation in working-groupsStudy design

StandardisationProblem-solving(working-groups)

Collection of patient-related dataRegistration infrastructure

CompilationAnalysesConclusionsPublicationsNew hypotheses

Other studiesLiterature

Own experienceOther studiesLiterature

One Good Example: Acute Lymphoblastic Leukaemia (ALL)

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Time from Diagnosis (Years)

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10-year Survival: 84% (n=685) 1992-2001

10-year Survival: 85% (n=588) 2002-2010

10-year Survival: 73% (n=567) 1982-1991

Survival ALL in Sweden

10-year Survival: 5 % (n=301) 1968-1972

10-year Survival: 42% (n=600) 1973-1981

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• Stepwise improvement• Uniform treatment• Registration• Intensification generally• Risk-adapted therapy• Introduction of new

diagnostic procedures• Introduction of genetic

markers• Continuous evaluation• Nordic collaboration

The NOPHO collaboration• Nordic Society of Pediatric Hematology & Oncology

• Founded in 1982

• Initially SE, DK, N, FIN, IS

• Lithuania joined 2015/2016

• Common protocol for AML since the 1980s and forALL since the early 1990s (later LT and EE)

• AML: Addition of Baltic states, NL, B, Hong Kong, Israel, Spain

• ALL: Basis for further collaboration(UK, NL, B, F, G, P, EI)

• Scientific, Logistic and Clinical collaboration mainlyin leukaemia (common protocols)

The Nordic collaborationreasons to work together

• A larger population-base for treatment-studiesNB! When results improve – need for furtherexpansion

• A large number of Nordic research projects• NOPHO is a partner for collaboration

internationally• Community and support (example the Baltic states)• Can we expand the collaboration into

- Solid tumours- CNS-tumours?

Distribution of paediatric cancer diagnoses. A total of 700-750 cases/year in the Nordic countries –

uncommon diseases

Both CNS-tumours and solid tumours – a large spectrum of diagnoses

What would we like to do?

• Extend the collaboration to solid tumours and CNS-tumours

• Rare cancers – we need to collaborate!- Nordic countries- Internationally

• Share knowledge (clinical data)

• Share biobank-material

• Share experimental research

Translational research

Inventory of preconditions:Nordic study-day Jan 2016

Quality RegistrationEvaluation of treatment

Divergent legislationBetween the Nordic countries

Clinical Trials/Research

Common legislation/guidelinesBetween the Nordic countries

”Legal conclusion”:The leukaemia collaboration has moved from ”ad hoc” quality registrationto clinical trials– problem with ”legacy registration” – what consent do we have?

The quality-registration legislation is not conform enough to allow Nordic registration of solid tumours and CNS-tumours(too small entities to form clinical trials)

Concrete plan

• Extend the NOPHO-collaboration to solid tumours (Paediatric ”NOPHO-care”) in the shape of a long term research project

• Compare therapies for rare cancers between countries

• Generate hypotheses for new research

• Stimulate translational research

Remaining Problems

• Legacy registration- possibility of asking for consent in

retrospect?- use of data from deceased patients?

• Legal limits for time of research projects?

• Research question specific enough?

Survival for children with cancerThe simple message – we know this is true because of registration

Nordic collaboration and registration will help solve it – but can we?