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To register a large number of patients with the diagnosis of a BCR-ABL 1- negative myeloid neoplasm (according to WHO 2008 / 2016 classification) in participating centers
To store samples from all patients (e.g. bone marrow aspirate, peripheral blood, plasma, and buccal swap, skin biopsy samples in exceptional cases)
To perform morphologic and genetic analyses
To assess clinical characteristics and outcome data using a defined catalogue containing clinically relevant variables
To assess biological disease features and correlate with clinical outcome data (prognostic and predictive markers)
To assess quality of life
To register a large number of patients with the diagnosis of a BCR-ABL 1- negative myeloid neoplasm (according to WHO 2008 / 2016 classification) in participating centers
To store samples from all patients (e.g. bone marrow aspirate, peripheral blood, plasma, and buccal swap, skin biopsy samples in exceptional cases)
To perform morphologic and genetic analyses
To assess clinical characteristics and outcome data using a defined catalogue containing clinically relevant variables
To assess biological disease features and correlate with clinical outcome data (prognostic and predictive markers)
To assess quality of life
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Registry study | Other |
| Measure | Description | Time Frame |
|---|---|---|
| Treatment decision | Treatment decision (watch and wait, standard, investigational) | 25 years |
| Response | Response of treatment | 25 years |
| Overall survival | Survival over the whole study duration | 25 years |
| Progression-free-survival | Survival without any progression | 25 years |
| Duration of response | Duration of response over the whole study duration | 25 years |
| Quality of life assessed by the Myeloproliferative Neoplasm Symptom Assessment Form (MPN-SAF Protocol 5/25/11, EORTC QLQ-C30, FACT-Lym (Fassung 4)), supplemented by information on self-assessed concomitant diseases and demographics. | Quality of life assessed by the Myeloproliferative Neoplasm Symptom Assessment Form (MPN-SAF Protocol 5/25/11, EORTC QLQ-C30, FACT-Lym (Fassung 4)), supplemented by information on self-assessed concomitant diseases and demographics. | 25 years |
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Inclusion Criteria:
Both female and male patients meeting the mentioned inclusion criteria will be included in this registry, because the risk to get a myeloid neoplasm does not depend on a patient's gender. Patients must meet all of the following inclusion criteria to be eligible for enrollment into the registry:
Exclusion Criteria:
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Patients with the diagnosis of a BCR-ABL 1-negative myeloid neoplasm in participating centers
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Frank Stegelmann, Dr. | Contact | +4973150045521 | frank.stegelmann@uniklinik-ulm.de |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Hämatologische Onkologie Praxis Augsburg | Recruiting | Augsburg | 86150 | Germany |
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| Klinikum Augsburg | Recruiting | Augsburg | 86156 | Germany |
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| Helios Klinikum, Bad Saarow | Recruiting | Bad Saarow | 15526 | Germany |
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| Klinikum Mittelbaden | Recruiting | Baden-Baden | 76532 | Germany |
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| MVZ Klinikum Coburg | Recruiting | Coburg | 96450 | Germany |
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| Donauwörth, Onko-Medeor | Recruiting | Donauwörth | 86609 | Germany |
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| Onkologie, BAG, Dresden | Recruiting | Dresden | 01307 | Germany |
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| Onkologie Erding | Recruiting | Erding | 85435 | Germany |
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| Universitätsklinikum Freiburg | Recruiting | Freiburg im Breisgau | 79106 | Germany |
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| Alb Fils Kliniken Göppingen | Recruiting | Göppingen | 73035 | Germany |
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| Universitätsklinikum Greifswald | Recruiting | Greifswald | 17475 | Germany |
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| Onkologische Praxis, Heidelberg | Withdrawn | Heidelberg | 69115 | Germany |
| Onkologische Schwerpunktpraxis, Heilbronn | Withdrawn | Heilbronn | 74072 | Germany |
| Marienhospital Bochum-Herne | Recruiting | Herne | 44625 | Germany |
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| Universitätsklinikum Jena | Recruiting | Jena | 07743 | Germany |
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| Klinikum Kempten-Oberallgäu gGmbH | Recruiting | Kempten | 87439 | Germany |
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| Landshut VK&K Studien GbR | Recruiting | Landshut | 84036 | Germany |
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| Leer, Studienzentrum Unter Ems | Active, not recruiting | Leer | 26789 | Germany |
| Universitätsklinikum Leipzig | Recruiting | Leipzig | 04103 | Germany |
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| Universitätsklinikum Magdeburg | Recruiting | Magdeburg | 39120 | Germany |
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| Universitätsklinikum Mannheim | Recruiting | Mannheim | 55131 | Germany |
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| Mannheim, Onkologiepraxis | Recruiting | Mannheim | 68161 | Germany |
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| Memmingen, Onkologiepraxis | Recruiting | Memmingen | 87700 | Germany |
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| Mühlenkreiskliniken Minden | Recruiting | Minden | 32429 | Germany |
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| Stauferklinikum Schwäbisch Gmünd | Recruiting | Mutlangen | 73557 | Germany |
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| Diakonie-Klinikum Stuttgart | Recruiting | Stuttgart | 70176 | Germany |
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| Stuttgart, MVZ am RBK | Recruiting | Stuttgart | 70376 | Germany |
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| Universitätsklinikum Ulm | Recruiting | Ulm | 89081 | Germany |
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| Rems-Murr-Kliniken Winnenden | Recruiting | Winnenden | 71334 | Germany |
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| Würzburg / Kitzingen, Gemeinschaftspraxis Dr. Schlag | Recruiting | Würzburg | 97080 | Germany |
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