from data collection to clinical quality management. patient-registry.com
DESCRIPTION
Collect and analyses data Our patient registries facilitate the structured and unlimited collection of all clinical data on diagnosis, follow-up and treatment which may be relevant for quality assurance, documentation and for future analyses. Always and everywhere Our patient registries are web-based, which means they can be accessed at any time and from any place around the world. All registered users need is an internet connection and personal login details. Additional software does not need to be installed. Security – for everyone involved Data protection is one of the key issues with patient registries. This includes establishing a flexible authorization system which protects against unauthorized access, anonymizing sensitive patient data and setting up a technical infrastructure that can deliver all of this. Simple and flexible Clinical patient registries always have complex requirements; however the quality of the registry depends particularly on accurate entries. Therefore our patient registries are as simple as possible, as flexible as necessary and only as complex as needed in each individual case. Used around the world – since 2002 Clinical data have been collected and analyzed in our patient registries for more than ten years. Today around 600 physicians work with our solution in approximately 300 centers and have collected several million items of data over this time.TRANSCRIPT
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© asoluto 2013
From data collection to clinical quality management.
Insights into a web-based patient registry platform.
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© asoluto 2013 patient-registry.com
Roadmap: 2002 – 20122
2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 20132001 2014 2015
10 years 20 countries
300 centers 600 physicians
5,000 patients
60,000 follow-ups
3,000,000 diagnostic parameters
Multinational Thromboreductin Registry
2001 2002
National CML Registry
2006 2007
National Myeloma Registry
2007 2008
Multinational Mastocytosis Registry
2011 2012
NationalProstate Cancer Registry
2013 2014
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patient-registry.com© asoluto 2013
From data collection …3
Administration
CentersPhysiciansPatients
1Documentation
Initial diagnosisFollow-ups
Treatment lines
2Evaluation
ReportsExports
…
3
24/7
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patient-registry.com© asoluto 2013
… to clinical quality management.4
2
adherence to evidence-based treatment guidelines
1
long-term data collection outside of clinical studies
3
standardized documentation of diagnosis and treatment
4
multicentric collaboration + benchmarking
5
regular monitoring and evaluation
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Easy to use interface
patient-registry.com© asoluto 2013
Interface + technical structure5
Easy to use interface
Business logicDatabase
Data layer Presentation layerBusiness layer
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Inside thePatient Registry
…
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Log in
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patient-registry.com© asoluto 2013
Log in: username + password8
online registration
check by registry coordinaor
login-data
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Logged in: welcome page9
1 2 3
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1Administration
1
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Administration: new patient11
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Documentation
2
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Documentation: initial diagnostic data13
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Documentation: treatment lines14
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Documentation: treatment details15
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How to reduce complexity
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Interface: reduce complexity17
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patient-registry.com© asoluto 2013
Interface: reduce complexity18
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patient-registry.com© asoluto 2013
Interface: reduce complexity19
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patient-registry.com© asoluto 2013
Interface: reduce complexity20
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Evaluation
3
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Evaluation: reports + data exports22
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Add-ons
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Add-ons: patient groups24
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Add-ons: charting parameters25
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Add-ons: survival curves etc.26
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Add-ons: adverse event reporting 27
ergänzen / update …
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Patienteneinverständniserklärung zur Registrierung von Daten in einem nationalen, österreichischen CML-Register und zur Weiterleitung von Daten an das CML-Register des European Leukemia Net (ELN)
Unter der Schirmherrschaft der Österreichischen Gesellschaft für Hämatologie & Onkologie (ÖGHO) werden Daten von Patienten /innen mit chronischer myeloischer Leukämie (CML) in einem Internet-basierten nationalen Register gesammelt und gespeichert. Mit den gesammelten Daten soll die Forschung zur Entwicklung neuer und verbesserter Behandlungsverfahren unterstützt und die Qualität der Betreuung von Patienten / innen mit CML gesichert und verbessert werden. Die Daten in diesem Register liegen nur in anonymer Form vor (ohne Angaben zu Ihrem Namen oder Ihrer Adresse). Wesentliche Daten dieses nationalen Registers werden, die Zustimmung eines Patienten /einer Patientin vorausgesetzt, elektronisch an das CML-Register des European Leukemia Net (ELN) weitergeleitet. Das ELN ist ein Kompetenznetzwerk europäischer Experten, Kliniken und akademischen Forschungs zentren zur Diagnose und Behandlung von Patienten / innen mit CML. Jeder Patient / jede Patientin erhält im nationalen CML-Register einen sogenannten UPC (Unique Personal Code) und niemand außerhalb Ihres behandelnden Krankenhauses kann Sie anhand dieses Codes identifizieren.
Die Europäische Union erließ Richtlinien, die das Sammeln und Speichern personenbezogener Daten regeln (95/46/EC). Damit soll gewährleistet sein, dass Ihre Privatsphäre als Patient / in gewahrt bleibt, wenn Ihre medi-zinischen Daten für Forschungszwecke verwendet werden. Wesentliche Voraussetzungen dieser Richtlinien bestehen darin, dass jeder Patient / jede Patientin um seine / ihre Zustimmung gefragt werden muss, wenn person-enbezogene Daten gesammelt und gespeichert werden. Weiters soll eine Zustimmung des Patienten / der Patientin über den Export seiner / ihrer Daten vorliegen, wenn die Daten an das CML-Register des European Leukemia Net weitergeleitet werden. Die Datenbank des österreichischen Registers befindet sich in Wien. Die Hauptdatenbank des ELN befindet sich in München.
Um den nationalen österreichischen und den europäischen Richtlinien zum Sammlen und Speichern personenbe-zogener Daten Rechnung zu tragen, bitten wir um Ihre Zustimmung, Daten, die Ihre CML Erkrankung und Behan-dlung betreffend zu sammeln, zu speichern, auszuwerten und an das europäische Register des ELN weiterleiten zu dürfen.
Ich ............................................................................................................................... (Patient, Eltern, Erziehungsberech tigter) wurde ausreichend über das Sammeln, Speichern, Auswerten im österreichischen CML-Register und die Weiter-leitung meiner Daten an des CML-Register des ELN informiert und stimme zu, dass Daten über meine CML Er-krankung und Behandlung, aber keine persönlichen Daten wie Name und Adresse, für das österreichische CML Register verwendet werden bzw. an das CML-Register des ELN weitergeleitet werden dürfen.
Unterschrift des Patienten / der Patientin Unterschrift des Arztes / der Ärztin(Eltern / Erziehungsberechtigten):
................................................................................................... .............................................................................................
Datum
..........................................................
Kontakt
Dr. Stefan Schmidt, CML-Register-KoordinatorE-Mail: [email protected] Tel.: +43-512-9003-82232
patient-registry.com© asoluto 2013
Add-ons: communication tools + materials28
DAS ÖSTERREICHISCHE CML-REGISTERwww.cml-registry.com
Klinisches Management von CML-Patienten, optimiert durch internetbasierte Software.
ANMELDEFORMULARBitte füllen Sie alle mit * gekennzeichneten Formularfelder aus.
ZENTRUMSDATEN
Name der Klinik* ..................................................................................................................................................................
Kurzname max. 8 Zeichen ..............................................................................................................................................
Strasse ........................................................................................................................................................................................
Nummer ....................................................................................................................................................................................
Postleitzahl ..............................................................................................................................................................................
Ort ...............................................................................................................................................................................................
IHRE BENUTZERDATEN
Position /Rolle* � Zentrumsleiter / in � Zentrumsmitarbeiter / in
Titel .............................................................................................................................................................................................
Vorname* .................................................................................................................................................................................
Nachname* .............................................................................................................................................................................
Telefonnummer .....................................................................................................................................................................
Persönliche E-Mail-Adresse* ...........................................................................................................................................
Kommentar ..............................................................................................................................................................................
........................................................................................................................................................................................................
........................................................................................................................................................................................................
Kontakt
Dr. Stefan Schmidt, CML-Register-KoordinatorE-Mail: [email protected], Tel.: +43-512-9003-82232, Fax: +43-512-504-25615
� Bitte senden Sie mir zukünftige Informationen zum Österreichischen CML-Register per E-Mail an die oben angegebene Adresse.
Bitte senden Sie das ausgefüllte Formular per Fax an +43-512-504-25615. Alternativ können sie sich auch online unter www.cml-registry.com anmelden.
Wir behandeln Ihre Daten vertraulich. Ihre E-Mailadresse wird nicht an Dritte weitergegeben und nur für Informationen zum Österreichischen CML-Register genutzt.
EINLADUNG
Workshop für CML-Register-Teilnehmer/innen.
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WANN & WO
Samstag, 18. April 2009 – 13:00 bis 15:00
Traklsaal, Salzburg CongressAuerspergstraße 6, A-5020 Salzburg
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Anmeldung & Teilnahmebedingungen
>PY�IP[[LU�\T�(UTLSK\UN��ILY�KHZ�Online-Formular bis zum 5. Aprilhttp://info.cml-registry.com/de/workshop.html
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cml registry Workshop
CML-Registry LOGIN
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CML-Registry-INFO-Website
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CML-INFO-Website
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Registry information website
Disease information website
Workshop invitationInformed consentRegistration form
Registry information folder
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Weitere Informationen …
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© asoluto 2013
ContactMartin VerdinoManaging Partner
[email protected]+43 1 533 36 53-10+43 660 533 36 53
Makartgasse 31010 Vienna, Austriawww.asoluto.com
in cooperation with:
@p_registry