Registry of the European Working Group (EWOG) of Myelodysplastic Syndrome (MDS) in children and adolescents

Registry of the European Working Group (EWOG) of Myelodysplastic Syndrome (MDS) in children and adolescents - EWOG-MDS Registry 2026

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00039965

Enrollment

9999

Registered

2026-05-07

Start date

2025-01-30

Completion date

Unknown

Last updated

2026-06-01

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

Conditions

D46

Interventions

Group 1: Patients with a confirmed diagnosis of MDS, RCC or MDS/MPD including JMML, aged < 21 years. Group 2: Individuals of any age with a germline predisposition to MDS, RCC or MDS/MPD, including th

Eligibility

Sex/Gender

All

Age

0 Years to 20 Years

Inclusion criteria

Inclusion criteria: Confirmed clinical diagnosis of MDS, RCC, or MDS/MPD including JMML, or diagnosis of a germline predisposition to these disorders; age < 21 years for patients with MDS, RCC, or MDS/MPD; no age restriction for individuals with germline predisposition; written informed consent from the patient or legal representative; eligibility confirmed by the treating physician according to protocol.

Exclusion criteria

Exclusion criteria: No written informed consent; severe aplastic anemia (SAA) registered in EWOG-SAA; RCC in classical inherited bone marrow failure syndromes including Fanconi anemia, dyskeratosis congenita or telomere biology disorder, severe congenital neutropenia, Shwachman-Diamond syndrome, Diamond-Blackfan anemia, and Pearson syndrome; transient myeloproliferative disorder and myeloid neoplasms associated with Down syndrome; classical myeloproliferative neoplasms such as chronic myeloid leukemia, polycythemia vera, essential thrombocythemia, primary myelofibrosis, or chronic eosinophilic leukemia; subjects not fulfilling the inclusion criteria or unable to understand the nature, significance, and consequences of registry participation.

Design outcomes

Primary

Measure	Time frame
Continuous registration of epidemiology, diagnostic procedures, treatment decisions and clinical outcomes in pediatric MDS, RCC, MDS/MPD and genetic predisposition	—

Secondary

Measure	Time frame
Assessment of biological disease characteristics Identification of prognostic markers Analysis of survival, treatment outcome and quality of life Assessment of social determinants of health	—

Countries

Germany

Contacts

Public ContactIngrid Furlan

Universitätsklinikum Ulm Kinder- und Jugendmedizin Pädiatrische Onkologie/Hämatologie

ingrid.furlan@uniklinik-ulm.de+49 731-500 57001

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Jun 11, 2026