THE INTERNATIONAL MYELOMA REGISTRY (IMR)

The Multiple Myeloma Registry is an important quality assurance tool for implementing and reviewing guidelines and their efficacy in regional, national and multinational patient populations, the assessment of adverse reactions in large patient populations outside a clinical trial and pharmacoeconomic analysis under “real life” conditions.

IMR - High quality patient data

Centers worldwide feed in patient records from myeloma patients.

The Multiple Myeloma Registry is an important quality assurance tool for implementing and reviewing guidelines and their efficacy in regional, national and multinational patient populations. The registry provides scientists and attending physicians with access to a huge sample of myeloma patient records.

This data allow us the assessment of adverse reactions in large patient populations outside clinical trials.


Basic Facts	N	Details
Austrian centers	17	AMR MAP
International centers	3	Port Elisabeth, Bari, Budapest
Number of patients (pts.) Number of medical entries	1408 8210	Multiple Myeloma Patients Follow ups
ePRO Assessments	3409	EORTC QLQ-C30,-MY20

History

The Austrian Myeloma Registry (AMR) is an initiative within the framework of health services research and quality control under the patronage of the Austrian Society of Hematology & Medical Oncology (OeGHO).
The development took place in 2008 within the COMET programs Oncotyrol I and II with additive funding through donations from the pharmaceutical industry and the non-profit Tyrolean Association for the Advancement of Cancer Research e.V.

01. Quality

The shift from acute cancer care to treating cancer as a chronic disease, quality assurance (QA) is becoming increasingly important in the medical treatment of cancer patients. Therefore, the registry provied valide longitudinal data from a large patient population under ‘real life’ conditions.

02. Challenge

Increasing complexity of modern diagnostics and therapy, the international recognition and dissemination of evidence-based treatment guidelines and the increased interest of patients, doctors and socual insurance companies in the transparency of services and the results of medical care.

03. Innovations

Linking Clinical Patient Data & Patient Reported Outcomes.

Monitoring of patients at home to improve early detection of clinically important problems for personalized therapy guidance.
Database withdetailed, naturalistic data on QoL and PROs for the longitudinal evaluation of specific hematologic treatment strategies.
Analysis of comparative effectiveness of medical interventions including the patient’s perspective.
Individualized feedback tool to inform patients about their current conditions and tips for improvement of subjective well-being for improved patient compliance and therapy outcome.
Increased efficiency of hospital units.

04. Safety

Secure, accessible, and efficient storage of data is paramount for the success of clinical trials specifically and the usage of software systems in daily clinical routine in general. In the context of systems recording their data electronically, this results in distinct requirements for securing the servers that are used for data collection.

Check Out Our Services!

Real World Evidence Analysis

Customized Real World Evidence Analysis: Application and treatment results of various drugs in clinical routine

Drug tracking

“Drug tracking” – what is the “real life” use of certain substances!

Automated SAE Reporting

Automated SAE Reporting System. Get SAE’s on the fly via E-Mail.

Analysis of defined patient cohorts

eal World Evidence Analysis – Analysis of defined patient cohorts under “real life” conditions (including all comorbidities, AEs & SAEs incl.)

Patient Reported Outcomes

Linking Clinical Patient Data & PRO Data

Market research

Market research: Covered throughout Austria, and parts of South Africa, Italy, Hungary

Statistics & Analysis

Overall Survial of Multiple Myeloma Patients in Austria
relative frequency of use of different therapies
Duration of certain therapy options & combinations
Outcome of MM patients after different therapy combinations & option

Complex Statistics & Analyzes

Contact the experts

Overall Survial of Multiple Myeloma Patients in Austria
relative frequency of use of different therapies
Duration of certain therapy options & combinations
Outcome of MM patients after different therapy combinations & option

Patient Reported Outcomes

Collecting PRO's via homemonitoring

ePROs offer several benefits for both medical research and daily clinical practice. These include a variety of issues related to structural aspects, clinical routine and research

SAVE THE DATE

1. DGHO 2020

2. International Society of Amyloidosis (ISA) 2020

3. 62nd ASH Meeting & Exposition – San Diego Congress Center

MULTIMEDIA

UPCOMING FEATURES

HL7 Interface to PRO’s
DeAnonyimzer
Individual, storeable export templates
Generating reports

ARTICLES 2020

Patients with double/triple copy number gains on C-MYC, BCL2, and/or BCL6 treated with standard chemotherapy have a similarly poor prognosis than those with high-grade B cell lymphoma with C-MYC and BCL2 and/or BCL6 rearrangements: a single-center experience on a consecutive cohort of large B cell lymphomas.

Willenbacher E, Willenbacher W, Weger R, Dominik W, Manzl C, Brunner A. Ann Hematol. 2020 Jul 1. doi: 10.1007/s00277-020-04124-0. Online ahead of print. PMID: 32613279

ARTICLES 2019

Complementing clinical cancer registry data with patient reported outcomes: A feasibility study on routine electronic patient-reported outcome assessment for the Austrian Myelome Registry.

Sztankay M, Neppl L, Wintner LM, Loth FL, Willenbacher W, Weger R, Weyrer W, Steurer M, Rumpold G, Holzner B. Eur J Cancer Care (Engl). 2019 Nov;28(6):e13154. doi: 10.1111/ecc.13154. Epub 2019 Aug 29. PMID: 31465136

Pixantrone demonstrates significant in vitro activity against multiple myeloma and plasma cell leukemia.

Willenbacher E, Jöhrer K, Willenbacher W, Flögel B, Greil R, Kircher B. Ann Hematol. 2019 Nov;98(11):2569-2578. doi: 10.1007/s00277-019-03797-6. Epub 2019 Oct 18.

Ixazomib-Thalidomide-Dexamethasone for induction therapy followed by Ixazomib maintenance treatment in patients with relapsed/refractory multiple myeloma.

Ludwig H, Poenisch W, Knop S, Egle A, Schreder M, Lechner D, Hajek R, Gunsilius E, Krenosz KJ, Petzer A, Weisel K, Niederwieser D, Einsele H, Willenbacher W, Melchardt T, Greil R, Zojer N. Br J Cancer. 2019 Oct;121(9):751-757. doi: 10.1038/s41416-019-0581-8. Epub 2019 Sep 27.

A cost-effectiveness analysis of denosumab for the prevention of skeletal-related events in patients with multiple myeloma in four European countries: Austria, Belgium, Greece, and Italy.

Terpos E, Jamotte A, Christodoulopoulou A, Campioni M, Bhowmik D, Kennedy L, Willenbacher W. J Med Econ. 2019 Aug;22(8):766-776. doi: 10.1080/13696998.2019.1606002. Epub 2019 Apr 29. PMID: 30969797

ARTICLES 2018

Impact of renal impairment on outcomes after autologous stem cell transplantation in multiple myeloma: a multi-center, retrospective cohort study. Antlanger M, Dust T, Reiter T, Böhm A, Lamm WW, Gornicec M, Willenbacher E, Nachbaur D, Weger R, Rabitsch W, Rasoul-Rockenschaub S, Worel N, Lechner D, Greinix H, Keil F, Gisslinger H, Agis H, Krauth MT. BMC Cancer. 2018 Oct 20;18(1):1008. doi: 10.1186/s12885-018-4926-0.

Multiple Myeloma Treatment in Real-world Clinical Practice: Results of a Prospective, Multinational, Noninterventional Study.

Mohty M, Terpos E, Mateos MV, Cavo M, Lejniece S, Beksac M, Bekadja MA, Legiec W, Dimopoulos M, Stankovic S, Durán MS, De Stefano V, Corso A, Kochkareva Y, Laane E, Berthou C, Salwender H, Masliak Z, Pečeliūnas V, Willenbacher W, Silva J, Louw V, Nemet D, Borbényi Z, Abadi U, Pedersen RS, Černelč P, Potamianou A, Couturier C, Feys C, Thoret-Bauchet F, Boccadoro M; EMMOS Investigators. Clin Lymphoma Myeloma Leuk. 2018 Oct;18(10):e401-e419. doi: 10.1016/j.clml.2018.06.018. Epub 2018 Jun 25.

Short overview on the current standard of treatment in newly diagnosed multiple myeloma.

Willenbacher E, Balog A, Willenbacher W. Memo. 2018;11(1):59-64. doi: 10.1007/s12254-018-0383-3. Epub 2018 Feb 21. PMID: 29606980

Towards Molecular Profiling in Multiple Myeloma: A Literature Review and Early Indications of Its Efficacy for Informing Treatment Strategies.

Willenbacher W, Seeber A, Steiner N, Willenbacher E, Gatalica Z, Swensen J, Kimbrough J, Vranic S. Int J Mol Sci. 2018 Jul 18;19(7):2087. doi: 10.3390/ijms19072087. PMID: 30021955

ARTICLES 2017

PET-guided treatment in patients with advanced-stage Hodgkin’s lymphoma (HD18): final results of an open-label, international, randomised phase 3 trial by the German Hodgkin Study Group. Borchmann P, Goergen H, Kobe C, Lohri A, Greil R, Eichenauer DA, Zijlstra JM, Markova J, Meissner J, Feuring-Buske M, Hüttmann A, Dierlamm J, Soekler M, Beck HJ, Willenbacher W, Ludwig WD, Pabst T, Topp MS, Hitz F, Bentz M, Keller UB, Kühnhardt D, Ostermann H, Schmitz N, Hertenstein B, Aulitzky W, Maschmeyer G, Vieler T, Eich H, Baues C, Stein H, Fuchs M, Kuhnert G, Diehl V, Dietlein M, Engert A. Lancet. 2017 Oct 20. pii: S0140-6736(17)32134-7.

Expression and release of glucose-regulated protein-78 (GRP78) in multiple myeloma. Steiner N, Borjan B, Hajek R, Jöhrer K, Göbel G, Willenbacher W, Kern J, Gunsilius E, Untergasser G. Oncotarget. 2017 Apr 21;8(34):56243-56254

Querschnittslähmung durch eine seltene Ursache: Differenzialdiagnose eines sekundären intramedullären Non-Hodgkin-Lymphoms. Mangesius S, Willenbacher W, Gizewski ER. Rofo. 2017 Oct;189(10):992-994. doi: 10.1055/s-0043-117886. Epub 2017 Sep 14

Treatment of patients with refractory metastatic cancer according to molecular profiling on tumor tissue in the clinical routine: an interim-analysis of the ONCO-T-PROFILE project. Seeber A, Gastl G, Ensinger C, Spizzo G, Willenbacher W, Kocher F, Leitner C, Willenbacher E, Amann A, Steiner N, Eisterer W, Voss A, Russell K, Zwierzina H. Genes Cancer. 2016 Sep;7(9-10):301-308.

A phase 2 study of rituximab plus lenalidomide for mucosa-associated lymphoid tissue lymphoma. Kiesewetter B, Willenbacher E, Willenbacher W, Egle A, Neumeister P, Voskova D, Mayerhoefer ME, Simonitsch-Klupp I, Melchardt T, Greil R, Raderer M; AGMT Investigators. Blood. 2017 Jan 19;129(3):383-385. doi: 10.1182/blood-2016-06-720599. Epub 2016 Nov 22

ARTICLES 2016

CCR10/CCL27 crosstalk contributes to failure of proteasome-inhibitors in multiple myeloma. Thangavadivel S, Zelle-Rieser C, Olivier A, Postert B, Untergasser G, Kern J, Brunner A, Gunsilius E, Biedermann R, Hajek R, Pour L, Willenbacher W, Greil R, Jöhrer K. Oncotarget. 2016 Nov 29;7(48):78605-78618.

Lenalidomide in Relapsed or Refractory Diffuse Large B-Cell Lymphoma: Is It a Valid Treatment Option? Mondello P, Steiner N, Willenbacher W, Ferrero S, Ghione P, Marabese A, Pitini V, Cuzzocrea S, Mian M. Oncologist. 2016 Sep;21(9):1107-12.

Bendamustine plus rituximab versus R-CHOP as first-line treatment for patients with indolent non-Hodgkin’s lymphoma: evidence from a multicenter, retrospective study. Mondello P, Steiner N, Willenbacher W, Wasle I, Zaja F, Zambello R, Visentin A, Mauro E, Ferrero S, Ghione P, Pitini V, Cuzzocrea S, Mian M. Ann Hematol. 2016 Jun;95(7):1107-14.

Cardiotoxicity with rituximab, cyclophosphamide, non-pegylated liposomal doxorubicin, vincristine and prednisolone compared to rituximab, cyclophosphamide, doxorubicin, vincristine, and prednisolone in frontline treatment of patients with diffuse large B-cell lymphoma: A randomised phase-III study from the Austrian Cancer Drug Therapy Working Group [Arbeitsgemeinschaft Medikamentöse Tumortherapie AGMT](NHL-14). Fridrik MA, Jaeger U, Petzer A, Willenbacher W, Keil F, Lang A, Andel J, Burgstaller S, Krieger O, Oberaigner W, Sihorsch K, Greil R. Eur J Cancer. 2016 May;58:112-21.

LOOKING BACK ON 5 YEARS OF HORIZON SCANNING IN ONCOLOGY. Nachtnebel A, Breuer J, Willenbacher W, Bucsics A, Krippl P, Wild C. Int J Technol Assess Health Care. 2016 Jan;32(1-2):54-60.

Real-World Use of 3rd Line Therapy for Multiple Myeloma in Austria: An Austrian Myeloma Registry (AMR) Analysis of the Therapeutic Landscape and Clinical Outcomes prior to the Use of Next Generation Myeloma Therapeutics. Willenbacher E, Weger R, Rochau U, Siebert U, Willenbacher W; Austrian Myeloma Registry (AMR). PLoS One. 2016 Mar 3;11(3):e0147381.

Low Beclin-1 expression predicts improved overall survival in patients treated with immunomodulatory drugs for multiple myeloma and identifies autophagy inhibition as a promising potentially druggable new therapeutic target: an analysis from The Austrian Myeloma Registry (AMR). Willenbacher W, Thangavadivel S, Greil R, Willenbacher E, Weger R, Manzl C, Jöhrer K, Brunner A. Leuk Lymphoma. 2016 Oct;57(10):2330-41.

Evaluating results from the multiple myeloma patient subset treated with denosumab or zoledronic acid in a randomized phase 3 trial. Raje N, Vadhan-Raj S, Willenbacher W, Terpos E, Hungria V, Spencer A, Alexeeva Y, Facon T, Stewart AK, Feng A, Braun A, Balakumaran A, Roodman GD. Blood Cancer J. 2016 Jan 8;6:e378

90Y-Ibritumomab-Tiuxetan Consolidation Therapy for Advanced-Stage Mantle Cell Lymphoma After First-Line Autologous Stem Cell Transplantation: Is It Time for a Step Forward? Mondello P, Steiner N, Willenbacher W, Arrigo C, Cuzzocrea S, Pitini V, Mian M. Clin Lymphoma Myeloma Leuk. 2016 Feb;16(2):82-8.

Bone marrow microenvironmental CD4 + and CD8 + lymphocyte infiltration patterns define overall- and progression free survival in standard risk multiple myeloma–an analysis from the Austrian Myeloma Registry. Willenbacher W, Willenbacher E, Zelle-Rieser C, Biedermann R, Weger R, Jöhrer K, Brunner A. Leuk Lymphoma. 2016;57(6):1478-81.

OUR TEAM

Highly qualified specialists

Roman Weger, M.Sc.

Registry-Coordinator & Project Manager Oncotyrol

Center for Personalized Cancer Medicine GmbH,
Karl-Kapferer-Straße 5
6020 Innsbruck/Austria
E-Mail: roman.weger@tirol-kliniken.at

Wolfgang Willenbacher, M.D.,

Senior Medical Officer

Center for Personalized Cancer Medicine GmbH,
Karl-Kapferer-Straße 5
6020 Innsbruck/Austria
E-Mail: wolfgang.willenbacher@tirol-kliniken.at

CONTACT

Start a project with us!

Karl-Kapferer-Straße 5
6020 Innsbruck/Austria

CALL US

+43 (0) 512 504 576523

DROP US A LINE

roman.weger@tirol-kliniken.at

Interested in joining the registry

If you would like to proceed further information regarding the International Myeloma Registry or need more informations regarding a DEMO access, feel free to leave us a message..