ATTR AmyloidosisITA-WebNetNCT05444920
The Italian Transthyretin Amyloidosis Web-Network
An observational study of ATTR Amyloidosis, run by Fondazione IRCCS Policlinico San Matteo di Pavia at 30 sites in Italy.
Trial summary
The study aims, by generating a large registry of patients with ATTR amyloidosis, including data at diagnosis and during follow up, to describe the natural history of ATTR amyloidosis in a real-world setting and to define and validate prognostic models, response criteria applicable at any point of the disease. Read more about this study
- Who is it for?
- Ages 18 to 99 years
- Conditions the study is for
- ATTR Amyloidosis
- How many people
- 1,000 participants
- Where
- 30 sitesItaly
- Study dates
- 13 Jul 2022to 1 Nov 2027
- How long will I take part?
- 5 Years
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 to 99 years
- All sexes
- No healthy volunteers
- Adult, Older adult
Study population: Patients will be entered the database pending on expressing an informed consent of the use of their data for research purposes. Data of deceased patients will be used only if they have expressed their consent to the use of their clinical data
Who may be able to join
- Suspected diagnosis of systemic and localized amyloidosis;
- age .18 years;
- ability to understand and willingness to sign an informed consent (patients who already sign informed consent for clinical data to be used in retrospective analyses will be accepted);
- planned (or ongoing) follow-up at participating center.
Who cannot join
- 1. Diagnosis of light chain (AL) amyloidosis
Trial locations and contacts
30 sites in 1 country. Contact the study team or a site near you to ask about taking part.
30 sites in 1 country
Italy30 sites, 30 recruiting
- Not yet recruiting
AOU Ospedali Riuniti
Ancona
Fabio Vagnarelli, MD
- Not yet recruiting
Policlinico di Bari
Bari
Rita Rizzi, MD
- Not yet recruiting
ASST Papa Giovanni XXIII
Bergamo
Emilia D'Elia, MD
- Not yet recruiting
ASST Spedali Civili di Brescia
Brescia
Daniela Tomasoni, MD
- Not yet recruiting
Ospedale Oncologico "Armando Businco"
Cagliari
Daniele Derudas, MD
- Not yet recruiting
Azienda Ospedaliera di Cosenza
Cosenza
Enrica Martino, MD
- Not yet recruiting
Presidio ospedaliero di Ivrea
Ivrea
Walter Grosso Marra, MD
- Not yet recruiting
ASST Ovest Milanese - Ospedale di Legnano
Legnano, MI
Corinna Antonia Inserra, MD
- Not yet recruiting
Asst Santi Paolo E Carlo
Milan
Vittorio Montefusco, MD
- Not yet recruiting
Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico
Milan
Gloria Santangelo, MD
- Not yet recruiting
IRCCS Istituto Clinico Humanitas
Milan
Giuseppe Pinto, MD
- Not yet recruiting
Istituto Auxologico Italiano
Milan
Francesco Perelli, MD
- Not yet recruiting
Istituto Monzino
Milan
Mauro Contini, MD
- Not yet recruiting
IRCCS San Gerardo Monza
Monza
Daniela Pini, MD
- Not yet recruiting
AOU San Luigi Gonzaga
Orbassano, TO
Carloalberto Biolè, MD
- Not yet recruiting
'Azienda Ospedale. Università di Padova
Padova
Alberto Cipriani, MD
- Recruiting
Fondazione IRCCS Policlinico San Matteo
Pavia, 27100
Paolo Milani, MD, +390382502994, p.milani@smatteo.pv.it
- Not yet recruiting
Azienda Ospedaliera di Perugia
Perugia
Cinzia Zuchi, MD
- Not yet recruiting
Ospedale Civile ASL Pescara
Pescara
Roberta Magnano, MD
- Not yet recruiting
Azienda Ospedaliera Sant'Andrea
Roma
Beatrice Musumeci, MD
- Not yet recruiting
Ematologia ASL Roma 1
Roma
Tommaso Caravita, MD
- Not yet recruiting
Fondazione Policlinico Universitario Agostino Gemelli CARDIOLOGIA
Roma
Francesca Graziani, MD
- Not yet recruiting
Policlinico Universitario Agostino Gemelli NEUROLOGIA
Roma
Marco Luigetti, MD
- Not yet recruiting
Plesso Ospedaliero "Andrea Tortora" di Pagani
Salerno
Catello Califano, MD
- Not yet recruiting
Azienda Ospedaliero Universitaria di Sassari
Sassari
Giuseppe Damiano Sanna, MD
- Not yet recruiting
Azienda Ospedaliero Universitaria Senese
Siena
Elisa Giacomin, MD
- Not yet recruiting
Ospedale San Giovanni Bosco
Torino
Piera Costanzo, MD
- Not yet recruiting
l'Ospedale di Treviglio-Caravaggio
Treviglio
Giovanna Faggiano, MD
- Not yet recruiting
Osp. Sant'Andrea
Vercelli
Lorenzo De Paoli, MD
- Not yet recruiting
Azienda Ulss 8 Berica
Vicenza
Edoardo Scomazzon, MD
About this study
Official title: The Italian Transthyretin Amyloidosis Web-Network (ITA-WebNet)
The study aims, by generating a large registry of patients with ATTR amyloidosis, including data at diagnosis and during follow up, to describe the natural history of ATTR amyloidosis in a real-world setting and to define and validate prognostic models, response criteria applicable at any point of the disease. The registry will also be used for data sharing and to allow the possibility of a close collaboration amongst the amyloidosis experts of the ARTC and all the physicians around the Country involved in the diagnosis and management of systemic amyloidosis. Thanks to the online registry, the diagnostic facility of the ARTC will be made available to requesting physicians.
- Conditions
- ATTR Amyloidosis
- Keywords
- amyloidosis, systemic amyloidosis
- Medical subject headings
- Amyloidosis, Immunoglobulin Light-chain Amyloidosis
What is being measured
The primary outcome is the main question the study is designed to answer.
Establishing an online tool for data-sharing, available for health care providers
Different data (types type of organ involvement, biomarkers of organ damage, date of onset of symptoms, date of diagnosis, type of treatment (if any)) will be shared between the health-care professionals and the panel of experts.
Measured: 5 years
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted6 Jul 2022
- Study start13 Jul 2022
- Primary completion31 Dec 2026 (estimated)
- Study completion1 Nov 2027 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for ATTR AmyloidosisStudies of the same condition, open and under way.
- More trials run by Fondazione IRCCS Policlinico San Matteo di PaviaThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Cohort
- Time perspective
- Other
- Enrolment
- 1,000 participants (estimated)
- Target duration
- 5 Years
Sponsor and investigators
- Lead sponsor
- Fondazione IRCCS Policlinico San Matteo di Pavia
- Sponsor type
- University, hospital or other
- Responsible party
- Principal investigator, Paolo Milani, Fondazione IRCCS Policlinico San Matteo di Pavia
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT05444920
- Sponsor's protocol ID
- AC-019-IT
- Acronym
- ITA-WebNet
- Status last verified
- Mar 2026
- First submitted
- 30 Jun 2022
- Last updated
- 27 Mar 2026
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- No
Study at a glance
From the registry record, last updated by the sponsor on 27 Mar 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- The Italian Transthyretin Amyloidosis Web-Network (ITA-WebNet)
- ClinicalTrials.gov ID
- NCT05444920
- Acronym / sponsor ID
- ITA-WebNet / AC-019-IT
- Conditions
- ATTR Amyloidosis
- Keywords
- amyloidosis, systemic amyloidosis
- Study type
- Observational
- Recruitment status
- Recruiting
- Enrolment
- 1,000 participants (estimated)
- Lead sponsor
- Fondazione IRCCS Policlinico San Matteo di PaviaUniversity, hospital or other
- Study start
- 13 Jul 2022 (actual)
- Primary completion
- 31 Dec 2026 (estimated)
- Study completion
- 1 Nov 2027 (estimated)
- First posted
- 6 Jul 2022 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
The study aims, by generating a large registry of patients with ATTR amyloidosis, including data at diagnosis and during follow up, to describe the natural history of ATTR amyloidosis in a real-world setting and to define and validate prognostic models, response criteria applicable at any point of the disease. The registry will also be used for data sharing and to allow the possibility of a close collaboration amongst the amyloidosis experts of the ARTC and all the physicians around the Country involved in the diagnosis and management of systemic amyloidosis. Thanks to the online registry, the diagnostic facility of the ARTC will be made available to requesting physicians.
Study design
- Observational model
- Cohort
- Time perspective
- Other
- Target follow-up
- 5 Years
Who may qualify
- Ages
- 18 to 99 years
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older adult
- Study population
- Patients will be entered the database pending on expressing an informed consent of the use of their data for research purposes. Data of deceased patients will be used only if they have expressed their consent to the use of their clinical data
Key inclusion criteria (4 listed)
- Suspected diagnosis of systemic and localized amyloidosis;
- age .18 years;
- ability to understand and willingness to sign an informed consent (patients who already sign informed consent for clinical data to be used in retrospective analyses will be accepted);
- planned (or ongoing) follow-up at participating center.
Key exclusion criteria (1 listed)
- 1. Diagnosis of light chain (AL) amyloidosis
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
Establishing an online tool for data-sharing, available for health care providers
Time frame: 5 years
Different data (types type of organ involvement, biomarkers of organ damage, date of onset of symptoms, date of diagnosis, type of treatment (if any)) will be shared between the health-care professionals and the panel of experts.
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 27 Mar 2026.
- Individual participant dataSharing planned: No
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Essen Amyloidosis Registry
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MAGNITUDE: A Phase 3 Study of NTLA-2001 in Participants With Transthyretin Amyloidosis With Cardiomyopathy (ATTR-CM)
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
30 sites in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of ATTR Amyloidosis, run by Fondazione IRCCS Policlinico San Matteo di Pavia at 30 sites in Italy.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 4 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: looking for participants now, as of the sponsor's last update on 27 Mar 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 30 sites in Italy. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Paolo Milani, MD, PhD (+390382502994, p.milani@smatteo.pv.it), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Establishing an online tool for data-sharing, available for health care providers (time frame: 5 years). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 27 Mar 2026.