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© Mukoviszidose e.V. Patient registries: The role of patient organisations Dr. 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 © Mukoviszidose e.V.
Generic types of registries QM- supporting registry QM- driving registry Basic registry ? © Mukoviszidose e.V. Comprehensive Information Epidemiological information only Update per patient once per year Event-driven update per patient
Completeness Complete National Registry Incomplete National Registry Complete Regional Registry Incomplete Regional Registry © Mukoviszidose e.V. Nationwide Regional Almost all (diagnosed) patients Sub-group of patients
Scope of registries Comprehensive Registry Epidemiology DemographicsGeneticsLocation Care DiagnosisHealth-Status Treatment schemes Outcomes © 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 Dont 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 © Mukoviszidose e.V.
Quality-Management CF-Germany PatientregistryCentre-software muko.dokAnnual report/commissioned reportingQuality circlesBenchmarking In-house-education Hospitation-program Other programs © 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 Patients (including 684 dead patients) Patients have agreed to transfer pseudonomyised data New software: muko.dok Annual report Commissioned reports © Mukoviszidose e.V.
Organization of German CF-registry CF-centres Patient consent Pseudonomyzation Data entry Step I: annually Step II: event driven Provides medical/scientific input Data centre Hannover Data management Query management Evaluation Reporting Committee for Therapy and Quality of Mukoviszidose e.V. Access to aggregated data Defines code of conduct Governs publications including annual report Decides on commissioned reporting (commercial/scientific) Provides scientific and medical input Is appointed by and reports into Board Board of Mukoviszidose e.V. Governs entire program Decides on financial rewards for CF-centres Contractual management © Mukoviszidose e.V.
Beispiel: Altersentwicklung seit 1995 © Mukoviszidose e.V.
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