Registry on data collected from patients with mastocytosis in Europe

Registry on data collected from patients with mastocytosis in Europe - ECNM Registry

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00007995

Enrollment

2000

Registered

2015-04-16

Start date

2014-10-10

Completion date

Unknown

Last updated

2025-04-07

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

Conditions

D47.0

Interventions

Group 1: Observational study to collect data from a large number of patients with mastocytosis in Europe over a longer time period (minimum 3 years) in order to learn more about the incidence, biology

Eligibility

Sex/Gender

All

Age

18 Years to No maximum

Inclusion criteria

Inclusion criteria: All patients with mastocytosis diagnosed since January 1990 in the participating european centers.

Exclusion criteria

Exclusion criteria: none.

Design outcomes

Primary

Measure	Time frame
· Percentage of patients in each category of mastocytosis in Europe · Percentage of patients in each category of mastocytosis in Europe in different European regions · Gender and age distribution of patients with mastocytosis in Europe	—

Secondary

Measure	Time frame
Percentage of patients who show progression to frank aggressive mastocytosis or AHNMD · Time to progression · Survival of patients with mastocytosis · Occurrence of mediator symptoms · Determination of risk factors predicting the progression as well as the resulting survival and/or outcome in patients fulfilling the criteria of mastocytosis. · Response to mediator therapy administered in routine	—

Measure

Time frame

Percentage of patients who show progression to frank aggressive mastocytosis or AHNMD · Time to progression · Survival of patients with mastocytosis · Occurrence of mediator symptoms · Determination of risk factors predicting the progression as well as the resulting survival and/or outcome in patients fulfilling the criteria of mastocytosis. · Response to mediator therapy administered in routine

—

Countries

Austria, Germany

Contacts

Public ContactKhalid Shoumariyeh

Universitätsklinikum FreiburgMedizinische Klinik IHämatologie, Onkologie und Stammzelltransplantation

khalid.shoumariyeh@uniklinik-freiburg.de0761 270 34010

Outcome results

None listed

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