Patient-Reported Outcomes in PHiladelphia-nEgative Cytogenetic mYeloproliferative Neoplasms (PROPHECY).

Gruppo Italiano Malattie EMatologiche dell'Adulto

Status: Active, not recruiting

Conditions: Myeloproliferative Neoplasm

Treatments: Other: Questionnaire

Study type: Observational

Funder types: Other

Identifiers

NCT04378855

GIMEMA QoL-MPN 0118

Details and patient eligibility

About

This study will ultimately aim at developing a GIMEMA platform for collecting HRQoL and symptom burden information on Italian patients with Philadelphia chromosome negative MPN. The main objective of the protocol is to improve our understanding of the impact of the disease and various treatments on patients-wellbeing, symptom burden and daily functioning.

Enrollment: 572 patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• Patients diagnosed with Polycythemia Vera (PV), Essential Thrombocythemia (ET) and Primary Myelofibrosis (pre-PMF, overt-PMF) and post-ET/post-PV Myelofibrosis (MF), (i.e. Philadelphia chromosome negative myeloproliferative neoplasm (MPN)) according to 2016 WHO classification.
• Known IPSS/IPSET/DIPSS risk score category at time of initial diagnosis of PV, ET and PMF, respectively.
• Initial diagnosis of MPN within one year before date of registration.
• Having a full baseline PRO Evaluation completed.
• Adult patients (≥ 18 years old).
• Written informed consent provided.

Exclusion criteria

• Having any kind of psychiatric disorder or major cognitive dysfunction problems hampering a self-reported evaluation.
• Not able to read and understand local language (i.e. Italian).