Italian Network MDS Registry

Fondazione Italiana Sindromi Mielodisplastiche-ETS10,000 enrolled

Overview

Epidemiological data collection of adult patients affected by myelodysplastic syndrome (MDS) newly diagnosed.

Development of an Italian regional registries MDS network using the same electronic case report form for data storage, with the following broad aims: * Ability to aggregate and process anonymous epidemiological data collected by individual regional registers; * Ability to aggregate the available data with those of other international registries existing.

Study Type

OBSERVATIONAL

Enrollment

10,000

Conditions

Myelodysplastic-Myeloproliferative Diseases

Eligibility

Sex: ALLMin age: 18 YearsMax age: 106 Years

Medical Language ↔ Plain English

Inclusion Criteria: * New diagnosis of MDS Exclusion Criteria: * Patient who refuse the signature of informed consent

Locations (20)

Ematologia, AO SS. Antonio e Biagio

Alessandria, AL, Italy

Outcomes

Primary Outcomes

Incidence of MDS diagnosis

Number of new cases every 100.000 person/year

Time frame: 6 years

Overall Response rate

Proportion of CR or PR after each line of treatment in term of erythroid, platelet and granulocyte response

Time frame: 6 years

Prevalence of MDS

Number of cases every 100.000 person

Time frame: 6 years

Overall survival

Time between MDS diagnosis and death due to any causes

Time frame: 6 years

Progression free survival

Time between MDS diagnosis and relapse/ progression or death due to any causes

Time frame: 6 years

Progression to AML

Time between MDS diagnosis and Progression to AML or death due to any causes

Time frame: 6 years

Central Contacts

Valeria Santini, Prof.

CONTACT

013120 segreteriafismonlus@ospedale.al.it

Segreteria FISM

CONTACT

013120 segreteriafismonlus@ospedale.al.it

Data from ClinicalTrials.gov

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