NCT05001087

A "Physician & Patient-powered" Cohort Registry (MY MYELOMA)

A "Physician & Patient-powered" Cohort Registry

• Status: Recruiting
• Phase: —
• Study type: Observational
• Enrollment: 1,900 (estimated)
• Sponsor: Fondazione EMN Italy Onlus · Academic / Other
• Sex: All
• Age: 18 Years
• Healthy volunteers: Not accepted

Summary

The aim of this observational study is the creation of a national multiple myeloma registry to monitor the current routine clinical practice in Italy and describe the standard of care adopted for the diagnosis and treatment of patients with multiple myeloma in the different Italian hematology centers.

Detailed description

In Italy, myeloma accounts for 1.3% of all tumour diagnoses in males and for 1.2% of all tumour diagnoses in women. The incidence is 9.5 new cases per 100,000 males and 8.1 cases per 100,000 females. Median age at diagnosis is 68 years and approximately 2% of patients experience onset before the age of 4011. Therefore is to establish a national disease registry to monitor current routine clinical practice in Italy and to describe the standard of care adopted for the diagnosis and treatment of patients with myeloma. National registries have already been established in some countries and a recently-published meta-analysis highlighted certain differences in treatment, survival and the demographic characteristics of patients. An Italian national registry is important for analysing the current situation, in order to deal with the changes that lie ahead. In addition to the standard epidemiological registry - as described in the statistical methods section - a patientpowered registry (PPR) will also be established to encourage patient participation.

Conditions

• Multiple Myeloma

Interventions

Type	Name	Description
OTHER	Observation	Not applicable-Observational study

Timeline

• Start date: 2021-03-16
• Primary completion: 2027-03-31
• Completion: 2027-03-31
• First posted: 2021-08-11
• Last updated: 2025-02-27

Locations

27 sites across 1 country: Italy