NCT04378855Active, not recruiting
Patient-Reported Outcomes in PHiladelphia-nEgative Cytogenetic mYeloproliferative Neoplasms (PROPHECY).
Patient-Reported Outcomes in PHiladelphia-nEgative Cytogenetic mYeloproliferative Neoplasms (PROPHECY): A GIMEMA Observational Registry for Italian MPN Patients
Source: ClinicalTrials.gov · Last updated 23 Sept 2025
Brief summary (registry, in English)
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.
- Status (registry)
- Active, not recruiting
- Study type
- Observational
- Enrollment
- 572 (actual)
- First submitted
- 28 Apr 2020
- Start date
- 29 May 2020
- Primary completion date
- 15 Nov 2023
- Lead sponsor
- Gruppo Italiano Malattie EMatologiche dell'Adulto
- Diseases
- Myeloproliferative neoplasms
- NCT number
- NCT04378855
What you commit to
- Study type: Observational
- Participants enrolled: 572
- From 29 May 2020 to the primary completion date, 15 Nov 2023
- 25 sites in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Other illness
- Having any kind of psychiatric disorder or major cognitive dysfunction problems hampering a self-reported evaluation.
Other
- Not able to read and understand local language (i.e. Italian).
Who the study is looking for
- 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.
Age in the registry: 18 years to - · Sex: All · Does not accept healthy volunteers
Sites (25)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| Aon Ss. Antonio E Biagio E C. Arrigo - Alessandria - Soc Ematologia Coordinator of this site? Confirm its status | Alessandria | Italy | Unknown status |
| Asl Di Asti, Ospedali Riuniti - Presidio Ospedaliero Cardinal G. Massaia - Sc Oncologia Coordinator of this site? Confirm its status | Asti | Italy | Unknown status |
| Irccs Oncologico Istituto Tumori Giovanni Paolo Ii - Bari - Uo Ematologia Coordinator of this site? Confirm its status | Bari | Italy | Unknown status |
| Aou Consorziale Policlinico - Bari - Uo Ematologia Con Trapianto Coordinator of this site? Confirm its status | Bari | Italy | Unknown status |
| Istituto di Ematologia "Lorenzo e A. Seragnoli" Coordinator of this site? Confirm its status | Bologna | Italy | Unknown status |
| Ao Brotzu, Presidio Ospedaliero A. Businco - Cagliari - Sc Ematologia E Ctmo Coordinator of this site? Confirm its status | Cagliari | Italy | Unknown status |
| Aou Careggi - Firenze - Sod Ematologia Coordinator of this site? Confirm its status | Florence | Italy | Unknown status |
| Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico UOC Oncoematologia- Padiglione Marcora 2° piano Coordinator of this site? Confirm its status | Milan | Italy | Unknown status |
| Aou Di Modena - Sc Ematologia Coordinator of this site? Confirm its status | Modena | Italy | Unknown status |
| Azienda Ospedaliera "S.Gerardo" Coordinator of this site? Confirm its status | Monza | Italy | Unknown status |
| Aou Federico Ii - Napoli - Uoc Ematologia Coordinator of this site? Confirm its status | Naples | Italy | Unknown status |
| .C.D.U. Ematologia - Università del Piemonte Orientale Amedeo Avogadro Coordinator of this site? Confirm its status | Novara | Italy | Unknown status |
| Aou Policlinico P. Giaccone - Palermo - Uo Ematologia Coordinator of this site? Confirm its status | Palermo | Italy | Unknown status |
| Fondazione Ircss Policlinico San Matteo - Pavia - Uo Ematologia Coordinator of this site? Confirm its status | Pavia | Italy | Unknown status |
| Aou Pisana - Uo Ematologia Universitaria Coordinator of this site? Confirm its status | Pisa | Italy | Unknown status |
| Ausl Di Reggio Emilia - Arcispedale Santa Maria Nuova, Irccs - Sc Ematologia Coordinator of this site? Confirm its status | Reggio Emilia | Italy | Unknown status |
| Ausl Della Romagna, Ospedale "Infermi" - Rimini - Uo Ematologia Coordinator of this site? Confirm its status | Rimini | Italy | Unknown status |
| C.R.O.B. - I.R.C.C.S. - Rionero in Volture - Uoc Ematologia Coordinator of this site? Confirm its status | Rionero in Vulture | Italy | Unknown status |
| Asl Roma 2, Ospedale S. Eugenio- Ospedale S.Eugenio - Uoc Ematologia Coordinator of this site? Confirm its status | Roma | Italy | Unknown status |
| Fondazione Policlinico Universitario Agostino Gemelli Irccs - Roma - Area Ematologica Coordinator of this site? Confirm its status | Roma | Italy | Unknown status |
| Università Degli Studi Di Roma "Sapienza" - Dipartimento Di Medicina Traslazionale E Di Precisione - U.O.C. Ematologia Coordinator of this site? Confirm its status | Roma | Italy | Unknown status |
| Aou Di Sassari - Cliniche Universitarie - Stabilimento Cliniche Di San Pietro - Uoc Ematologia Coordinator of this site? Confirm its status | Sassari | Italy | Unknown status |
| Ospedale Mauriziano Umberto I - Torino - Scdu Ematologia Coordinator of this site? Confirm its status | Torino | Italy | Unknown status |
| Aou Città Della Salute E Della Scienza, Ospedale S. Giovanni Battista Molinette - Torino - Sc Ematologia - Università Degli Studi Di Torino Coordinator of this site? Confirm its status | Torino | Italy | Unknown status |
| Asl to 2, Torino Nord Emergenza San Giovanni Bosco - Ssd Ematologia Coordinator of this site? Confirm its status | Torino | Italy | Unknown status |
This page is information, not medical advice. Discuss any trial with your doctor.