German MPN-Registry for BCR-ABL1-Negative Myeloid Neoplasms of the German Study Group MPN (GSG-MPN)

Recruiting

Conditions: Myeloproliferative neoplasms: Polycythemia vera (PV)
Primary myelofibrosis (PMF)
Essential thrombocythemia (ET)
Chronic eosinophilic leukemia
MPN unclassifiable (MPNu)
Myeloid/lymphoid neoplasms with eosinophilia and rearrangement of PDGFRA, PDGFRB, or FGFR1
MDS/MPN
D45
D47.3
D47.4

Registration Number: DRKS00006035

Lead Sponsor: Klinik für Hämatologie, Onkologie, Hämostaseologie und SZT, Uniklinik RWTH Aachen

Brief Summary: Not available

Detailed Description: Not available

Recruitment & Eligibility

Status: Recruiting

Sex: All

Target Recruitment: 999999

Inclusion Criteria

Diagnosis of BCR-ABL1-negative MPN according to WHO criteria and/or IWG-MRT criteria
- 18 years or older
- Written informed consent

Exclusion Criteria

- Severe neurological or psychiatric disorder affecting the ability to give consent
- No consent for registration, storage and handling of personal (medical) data

Study & Design

Study Type: observational

Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
- Registration of patients with BCR-ABL1-negative myeloid neoplasms<br>- Preservation of bone marrow, peripheral blood, and if necessary, urine samples , germline material in the biomaterial banks in Aachen and Ulm<br>- Documentation of clinical characteristics and epidemiological data at diagnosis and in Follow up, using a defined catalog of variables<br>- Evaluation of prognostic and predictive markers<br>- Documentation of the most important patient-relevant clinical endpoints: overall survival (OS) and quality of life at diagnosis and in Follow up

Secondary Outcome Measures

Name	Time	Method
- Documentation of further patient-relevant clinical endpoints (outcomes): response rates, disease-associated mortality, transformation rate<br>- Documentation and evaluation of the quality of therapy and diagnosis using quality indicators<br>- Validation of published prognostic factors within the registry cohort and search for new possible prognostic factors<br>- Correlation of clinical endpoints with chosen therapy<br>- Collection and description of new therapies/ supportive care<br><br>