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| Name | Class |
|---|---|
| Deutsche Krebshilfe e.V., Bonn (Germany) | OTHER |
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PRO-RED is a prospective, longitudinal, and multicenter observational study. Enrolled patients will be followed for 6 months in at least monthly intervals in terms of their received red blood cell transfusions and routine myelodysplastic neoplasms (MDS)-associated clinical parameters. In addition, the participating subjects will be provided with a digital/mobile application covering a smartphone app or paper-based questionnaires to answer a set of quality of life (QoL) questions once a week. During routine visits in the clinical trials center performed by the treating physician (at least every month), patients will answer standardized questionnaires for the assessment of MDS-related QoL. Also, included patients will take a photo of fingernails/eyelids with their smartphone camera with the aim to further analyze these pictures in a way to potentially deduct correlated hemoglobin (Hb)-values. As a long term aim beyond the PRO-RED study, the data will serve as a training cohort for the development of an algorithm for image-based calculation of individual Hb levels.
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| Measure | Description | Time Frame |
|---|---|---|
| health-related quality of life | health-related quality of life assessed by patient reported questionnaires based on EORTC QLQ-C30 | 6 months |
| health-related quality of life | health-related quality of life assessed by patient reported questionnaires based on QUALMS | 6 months |
| Course of hemoglobin levels | Hemoglobin level measurements at point of care | 6 months |
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Inclusion Criteria:
Exclusion Criteria:
- Suspected lack of compliance according to the investigator
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Patients suffering from lower-risk myelodysplastic neoplasms (MDS) or MDS/MPN with red blood cell transfusion-dependent anemia
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Universitätsklinik Innsbruck | Innsbruck | 6020 | Austria | |||
| Charité Universitätsmedizin Berlin |
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| ID | Term |
|---|---|
| D000740 | Anemia |
| ID | Term |
|---|---|
| D006402 | Hematologic Diseases |
| D006425 | Hemic and Lymphatic Diseases |
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| Berlin |
| 12203 |
| Germany |
| Klinikum Chemnitz gGmbH | Chemnitz | 09116 | Germany |
| Gemeinschaftspraxis Hämatologie-Onkologie | Dresden | 01307 | Germany |
| Universitätsklinikum Carl Gustav Carus an der Technischen Universität Dresden | Dresden | 01307 | Germany |
| Universitätsklinikum Düsseldorf | Düsseldorf | 40225 | Germany |
| Universitätsklinikum Jena | Jena | 07747 | Germany |
| University Hospital Leipzig | Leipzig | 04103 | Germany |
| Universitätsmedizin der Johannes Gutenberg-Universität Mainz | Mainz | 55131 | Germany |
| Universitätsmedizin Mannheim | Mannheim | 68167 | Germany |
| Friedrich-Ebert-Krankenhaus GmbH | Neumünster | 24534 | Germany |