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

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

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00006035

Enrollment

999999

Registered

2014-03-31

Start date

2012-10-08

Completion date

Unknown

Last updated

2026-03-30

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Myeloproliferative neoplasms: Polycythemia vera (PV)

Interventions

Group 1: This registry documents clinical data (symptoms, laboratory parameters, etc.) of patients with myeloproliferative neoplasms. In addition, quality of life is assessed using a questionnaire and

Eligibility

Sex/Gender

All

Age

18 Years to No maximum

Inclusion criteria

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

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

Design outcomes

Primary

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

Measure

Time frame

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

—

Secondary

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

Measure

Time frame

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

—

Countries

Germany

Contacts

Public ContactKim Kricheldorf

Klinik für Hämatologie, Onkologie, Hämostaseologie und SZT, Uniklinik RWTH Aachen

kkricheldorf@ukaachen.de+49 241 8037029

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Apr 4, 2026