Registry following people with Fabry disease and their heart health
Collects long-term data on people with Fabry disease, focusing on heart involvement.
Plain-language title generated from the registry record
Registry title: Italian Anderson Fabry Disease Cardiovascular Registry
Key facts
- Where
- Ancona, Arezzo, Bari, Bergamo, Bologna, Brescia, Cagliari, Caserta, Catania, Catanzaro, Chieti, Cosenza, Florence, Foggia, Genova, Ivrea, Lecce, Manfredonia, Messina, Milan, Naples, Novara, Padova, Palermo, Parma, Perugia, Piacenza, Pisa, Potenza, Reggio Calabria, Reggio Emilia, Rimini, Roma, Salerno, San Donato Milanese, Siena, Taranto, Torino, Trento, Trieste, Udine, and Verona, ItalySee the 54 sites
Where in Italy
- A O Universitaria Ospedali Riuniti AnconaAncona, ItalyTaking people
- Clinica cardiologica AZ ospedaliera TorretteAncona, ItalyNot yet recruiting
- Ospedale San DonatoArezzo, ItalyNot yet recruiting
- Policlinico BariBari, ItalyTaking people
- Asst Papa Giovanni XXIIIBergamo, ItalyTaking people
- IRCCS Azienda Ospedaliero-Universitaria di BolognaBologna, ItalyTaking people
- U.O.Cardiologia Spetali Civili 1Brescia, ItalyNot yet recruiting
- Azienda Ospedaliera G. BrotzuCagliari, ItalyNot yet recruiting
- Azienda Ospedaliera UniversitariaCagliari, ItalyNot yet recruiting
- AORN "Sant'Anna e San Sebastiano" di CasertaCaserta, ItalyNot yet recruiting
- Policlinico RodolicoCatania, ItalyTaking people
- Azienda Ospedaliero-Universitaria Mater DominiCatanzaro, ItalyNot yet recruiting
- ASL 2 Chieti - Ospedale Policlinico SS. AnnunziataChieti, ItalyNot yet recruiting
- Azienda Ospedaliera di Cosenza Università della CalabriaCosenza, ItalyNot yet recruiting
- Azienda Ospedaliero Universitaria Careggi e MeyerFlorence, ItalyTaking people
- A O Universitaria Ospedali Riuniti di FoggiaFoggia, ItalyNot yet recruiting
- IRCCS Ospedale Policlinico San MartinoGenova, ItalyNot yet recruiting
- Ospedale IvreaIvrea, ItalyNot yet recruiting
- Ospedale Vito FazziLecce, ItalyNot yet recruiting
- Ospedale Casa Sollievo della sofferenzaManfredonia, ItalyNot yet recruiting
- Policlinico G. MartinoMessina, ItalyNot yet recruiting
- Centro Cardiologico MonzinoMilan, ItalyTaking people
- IRCCS Ospedale Maggiore Policlinico di MilanoMilan, ItalyNot yet recruiting
- IRCCS San Gerardo dei Tintori - S.C. Nefrologia, Monza - Università di Milano BicoccaMilan, ItalyNot yet recruiting
- Ospedale NiguardaMilan, ItalyNot yet recruiting
- AO Dei Colli - Ospedale MonaldiNaples, ItalyTaking people
- AOU PoliclinicoNaples, ItalyNot yet recruiting
- Ospedale Maggiore della CaritàNovara, ItalyNot yet recruiting
- Ospedale PadovaPadova, ItalyTaking people
- Policlinico P. GiacconePalermo, ItalyNot yet recruiting
- Azienda Ospedaliero Universitaria di ParmaParma, ItalyNot yet recruiting
- Ospedale di PerugiaPerugia, ItalyTaking people
- Azienda Ospedaliera "Guglielmo da Saliceto" di PiacenzaPiacenza, ItalyNot yet recruiting
- Fondazione Toscana Gabriele MonasterioPisa, ItalyTaking people
- Azienda Ospedaliera Regionale S.CarloPotenza, ItalyNot yet recruiting
- Ospedale Metropolitano Riuniti "Bianchi - Melacrino - MorelliReggio Calabria, ItalyNot yet recruiting
- Arcispedale S. Maria NuovaReggio Emilia, ItalyTaking people
- Ospedale degli Infermi di Rimini, AUSL RomagnaRimini, ItalyNot yet recruiting
- Ospedale Sant'AndreaRoma, ItalyNot yet recruiting
- Policlinico CasilinoRoma, ItalyNot yet recruiting
- Policlinico GemelliRoma, ItalyTaking people
- Policlinico Tor VergataRoma, ItalyNot yet recruiting
- Policlinico Umberto I - Università 'Sapienza'Roma, ItalyNot yet recruiting
- San Camillo ForlaniniRoma, ItalyNot yet recruiting
- Ospedale S.Giovanni di Dio e Ruggì d'AragonaSalerno, ItalyNot yet recruiting
- IRCCS Policlinico San DonatoSan Donato Milanese, ItalyNot yet recruiting
- Azienda Ospedaliera Universitaria SienaSiena, ItalyNot yet recruiting
- Ospedale SS.ma AnnunziataTaranto, ItalyTaking people
- MolinetteTorino, ItalyTaking people
- Ospedale Koelliker di TorinoTorino, ItalyNot yet recruiting
- Ospedale S. ChiaraTrento, ItalyNot yet recruiting
- Azienda Sanitaria Universitaria Giuliano IsontinaTrieste, ItalyNot yet recruiting
- Azienda Sanitaria Universitaria Friuli CentraleUdine, ItalyNot yet recruiting
- Ospedale Policlinico Sede di Borgo RomaVerona, ItalyNot yet recruiting
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- IRCCS Azienda Ospedaliero-Universitaria di Bologna
- Trial code
- NCT06806813
- Record updated
- 4 February 2025
- Original description
The RICMAF Study is an observational, multicenter, non-pharmacological study conducted in Italy.Read full original descriptionShow less
Italian Anderson Fabry Disease Cardiovascular Registry
The RICMAF Study is an observational, multicenter, non-pharmacological study conducted in Italy.
Although Anderson-Fabry Disease (AFD) is rare, it is likely underdiagnosed due to its nonspecific symptoms, leading to delays in proper treatment. The RICMAF Study aims to improve understanding of AFD, especially its cardiac manifestations, which are a major cause of mortality. By gathering data from a large, nationwide patient registry, this study seeks to answer key questions about AFD's clinical course and improve patient outcomes.
The primary goals of the RICMAF Study are:
* To analyze the clinical profile, prevalence, and incidence of AFD, along with patients' family history and disease progression. * To identify early markers of cardiac involvement and predictors of cardiovascular complications to personalize care. * To investigate the relationship between genetic mutations, clinical presentation, and prognosis. * To find early indicators of organ damage through laboratory and imaging tests.
All patients diagnosed with AFD following international guidelines are eligible.
Inclusion: Patients diagnosed with Anderson Fabry disease; Age ≥ 2 years at diagnosis; Obtaining informed consent from the patient and parent or legal guardian.
Exclusion: None.