© M

ukovis

zid

ose

e.V

.

Patient registries:The role of patient

organisationsDr. Andreas Reimann

Mukoviszidose e.V. –

German CF-association

© Mukoviszidose e.V.

Patient registries: Why?

• Epidemiological information

– Prevalence

– Incidence

• Demographic information

• Genetics (if applicable)

• Information about way of diagnosis

• Localisation of care

• Health status of patients

• Treatment schemes

• Outcomes

• Epidemiological information

– Prevalence

– Incidence

• Demographic information

• Genetics (if applicable)

• Information about way of diagnosis

• Localisation of care

• Health status of patients

• Treatment schemes

• Outcomes

• Science

• Understanding „natural courses of disease“

• Estimating no. of undiagnosed patients

• Organizing care better

• Improving care

• Identifying „unmet needs“

• Science

• Understanding „natural courses of disease“

• Estimating no. of undiagnosed patients

• Organizing care better

• Improving care

• Identifying „unmet needs“

© M

ukovis

zid

ose

e.V

.

Generic types of registries

© Mukoviszidose e.V.

ComprehensiveInformation

Epidemiological information only

Update per patientonce per year

Event-drivenupdate per patient

Completeness

© Mukoviszidose e.V.

Nationwide

Regional

Almost all(diagnosed)patients

Sub-group of patients

Scope of registries

© Mukoviszidose e.V.

Ways of organizing registries

Organizer: Public bodies

Scientific networks

Patient organizat-ions

Single academics or institutions

Finance +++ ++ + +

Access +++ (+) ++ -

Organisation ++ ++ ? +

Comprehensiveness ? ++ ++ ++

Completeness +++ ? ? ?

Code of conduct +++ +++ ? ?

© Mukoviszidose e.V.

Code of conduct

• Confidentiality

• Quality of data

• Clarification of data queries

• External evaluation

• Reporting– Entire data-set

– Centre specific data

• Publication policy

• Access to (pseudo/anonymized) data

© Mukoviszidose e.V.

Role of patient-organizations

• Motivating and informing patients

• Input to scope of registry

• Organizational support

• Providing data for scientific and health-care system related purposes

• Financial support

• Evaluating registry reports/drawing conclusions on health-care policies

© Mukoviszidose e.V.

Concerns of patients

• „Don‘t know what this is good for“

• Confidentiality

• Feeling „outside the loop“

• Lacking or hampered access to (aggregated) data

• Poor quality of data

© Mukoviszidose e.V.

EXAMPLE:GERMAN CF REGISTRY

© M

ukovis

zid

ose

e.V

.

Quality-Management CF-Germany

© Mukoviszidose e.V.

German CF-patient registry

• Organized on behalf of Mukoviszidose e.V. by the centre for quality and management of the Lower-Saxony Chamber of Pyhsicians in Hannover

• Financed by Mukoviszidose e.V., partially co-financed by Christiane Herzog Foundation

• 95 CF-care centres

• 7.460 Patients (including 684 dead patients)

• 7.151 Patients have agreed to transfer pseudonomyised data

• New software: muko.dok

• Annual report

• Commissioned reports

© Mukoviszidose e.V.

Organization of German CF-registry

© Mukoviszidose e.V.

Beispiel:Altersentwicklung seit 1995

© M

ukovis

zid

ose

e.V

.

Benchmarking (= „Lernen von den/dem Besten“)

Projekt BenchmarkingProjekt Benchmarking

Benchmarking: „Dynamisierung“ des Qualitätsentwicklung (Konsentierung(gemeinsam) PDCA („Wirksamkeit)