The Italian Transthyretin Amyloidosis Web-Network
ITA-WebNet
1 other identifier
observational
1,000
1 country
30
Brief 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. 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.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Jul 2022
Longer than P75 for all trials
30 active sites
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
First Submitted
Initial submission to the registry
June 30, 2022
CompletedFirst Posted
Study publicly available on registry
July 6, 2022
CompletedStudy Start
First participant enrolled
July 13, 2022
CompletedPrimary Completion
Last participant's last visit for primary outcome
December 31, 2026
ExpectedStudy Completion
Last participant's last visit for all outcomes
November 1, 2027
March 27, 2026
March 1, 2026
4.5 years
June 30, 2022
March 23, 2026
Conditions
Keywords
Outcome Measures
Primary Outcomes (1)
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.
5 years
Eligibility Criteria
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
You may qualify if:
- 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.
You may not qualify if:
- \. Diagnosis of light chain (AL) amyloidosis
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (30)
ASST Ovest Milanese - Ospedale di Legnano
Legnano, MI, Italy
AOU San Luigi Gonzaga
Orbassano, TO, Italy
AOU Ospedali Riuniti
Ancona, Italy
Policlinico di Bari
Bari, Italy
ASST Papa Giovanni XXIII
Bergamo, Italy
ASST Spedali Civili di Brescia
Brescia, Italy
Ospedale Oncologico "Armando Businco"
Cagliari, Italy
Azienda Ospedaliera di Cosenza
Cosenza, Italy
Presidio ospedaliero di Ivrea
Ivrea, Italy
Asst Santi Paolo E Carlo
Milan, Italy
Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico
Milan, Italy
IRCCS Istituto Clinico Humanitas
Milan, Italy
Istituto Auxologico Italiano
Milan, Italy
Istituto Monzino
Milan, Italy
IRCCS San Gerardo Monza
Monza, Italy
'Azienda Ospedale. Università di Padova
Padua, Italy
Fondazione IRCCS Policlinico San Matteo
Pavia, 27100, Italy
Azienda Ospedaliera di Perugia
Perugia, Italy
Ospedale Civile ASL Pescara
Pescara, Italy
Azienda Ospedaliera Sant'Andrea
Roma, Italy
Ematologia ASL Roma 1
Roma, Italy
Fondazione Policlinico Universitario Agostino Gemelli CARDIOLOGIA
Roma, Italy
Policlinico Universitario Agostino Gemelli NEUROLOGIA
Roma, Italy
Plesso Ospedaliero "Andrea Tortora" di Pagani
Salerno, Italy
Azienda Ospedaliero Universitaria di Sassari
Sassari, Italy
Azienda Ospedaliero Universitaria Senese
Siena, Italy
Ospedale San Giovanni Bosco
Torino, Italy
l'Ospedale di Treviglio-Caravaggio
Treviglio, Italy
Osp. Sant'Andrea
Vercelli, Italy
Azienda Ulss 8 Berica
Vicenza, Italy
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- COHORT
- Time Perspective
- OTHER
- Target Duration
- 5 Years
- Sponsor Type
- OTHER
- Responsible Party
- PRINCIPAL INVESTIGATOR
- PI Title
- Principal Investigator
Study Record Dates
First Submitted
June 30, 2022
First Posted
July 6, 2022
Study Start
July 13, 2022
Primary Completion (Estimated)
December 31, 2026
Study Completion (Estimated)
November 1, 2027
Last Updated
March 27, 2026
Record last verified: 2026-03
Data Sharing
- IPD Sharing
- Will not share