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Italian MPN patients share their stories in landmark Quality-of-Life study

NCT ID NCT04378855

Knowledge-focused Sponsor: Gruppo Italiano Malattie EMatologiche dell'Adulto Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing This study
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 25, 2026 · Last updated Jun 26, 2026 · Updated 1 time

Summary

This study is collecting information on quality of life and symptoms from 572 Italian patients with certain types of blood cancers called myeloproliferative neoplasms (MPNs). Participants fill out questionnaires about how their disease and treatments affect their daily functioning and well-being. The goal is to build a platform to better understand patient experiences, not to test a new drug or therapy.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this study could help doctors better understand how myeloproliferative neoplasms affect patients' daily lives and well-being.
What could go wrong
This is an observational study, so it does not test any new treatment. Results may not lead to direct changes in care.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

572 people

The number who actually took part.

Started

May 2020

Expected to finish

Nov 2025

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Adult patients with myeloproliferative neoplasms (MPN)

Ages

18 years and older

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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).

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Conditions

The condition(s) this trial relates to.

acquired polycythemia vera essential thrombocythemia Myeloproliferative Disorders myeloproliferative neoplasm primary myelofibrosis

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Myeloproliferative neoplasm

Contacts and locations

Locations

  • .C.D.U. Ematologia - Università del Piemonte Orientale Amedeo Avogadro

    Novara, Italy

  • Ao Brotzu, Presidio Ospedaliero A. Businco - Cagliari - Sc Ematologia E Ctmo

    Cagliari, Italy

  • Aon Ss. Antonio E Biagio E C. Arrigo - Alessandria - Soc Ematologia

    Alessandria, Italy

  • Aou Careggi - Firenze - Sod Ematologia

    Florence, Italy

  • Aou Città Della Salute E Della Scienza, Ospedale S. Giovanni Battista Molinette - Torino - Sc Ematologia - Università Degli Studi Di Torino

    Torino, Italy

  • Aou Consorziale Policlinico - Bari - Uo Ematologia Con Trapianto

    Bari, Italy

  • Aou Di Modena - Sc Ematologia

    Modena, Italy

  • Aou Di Sassari - Cliniche Universitarie - Stabilimento Cliniche Di San Pietro - Uoc Ematologia

    Sassari, Italy

  • Aou Federico Ii - Napoli - Uoc Ematologia

    Naples, Italy

  • Aou Pisana - Uo Ematologia Universitaria

    Pisa, Italy

  • Aou Policlinico P. Giaccone - Palermo - Uo Ematologia

    Palermo, Italy

  • Asl Di Asti, Ospedali Riuniti - Presidio Ospedaliero Cardinal G. Massaia - Sc Oncologia

    Asti, Italy

  • Asl Roma 2, Ospedale S. Eugenio- Ospedale S.Eugenio - Uoc Ematologia

    Roma, Italy

  • Asl to 2, Torino Nord Emergenza San Giovanni Bosco - Ssd Ematologia

    Torino, Italy

  • Ausl Della Romagna, Ospedale "Infermi" - Rimini - Uo Ematologia

    Rimini, Italy

  • Ausl Di Reggio Emilia - Arcispedale Santa Maria Nuova, Irccs - Sc Ematologia

    Reggio Emilia, Italy

  • Azienda Ospedaliera "S.Gerardo"

    Monza, Italy

  • C.R.O.B. - I.R.C.C.S. - Rionero in Volture - Uoc Ematologia

    Rionero in Vulture, Italy

  • Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico UOC Oncoematologia- Padiglione Marcora 2° piano

    Milan, Italy

  • Fondazione Ircss Policlinico San Matteo - Pavia - Uo Ematologia

    Pavia, Italy

  • Fondazione Policlinico Universitario Agostino Gemelli Irccs - Roma - Area Ematologica

    Roma, Italy

  • Irccs Oncologico Istituto Tumori Giovanni Paolo Ii - Bari - Uo Ematologia

    Bari, Italy

  • Istituto di Ematologia "Lorenzo e A. Seragnoli"

    Bologna, Italy

  • Ospedale Mauriziano Umberto I - Torino - Scdu Ematologia

    Torino, Italy

  • Università Degli Studi Di Roma "Sapienza" - Dipartimento Di Medicina Traslazionale E Di Precisione - U.O.C. Ematologia

    Roma, Italy

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