Italian Mastocytosis Registry
Official title: A Retrospective/Prospective, Multi-Center, Observational Registry Compiling Data on the Natural History and Management of Patients Diagnosed With Mastocytosis
Run by Associazione Rete Italiana Mastocitosi · NCT07917156 · Data updated 2026-11-12
This registry collects medical data from adults with systemic mastocytosis across 27 Italian centers to see how the disease progresses and how care varies over time.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 18 Years and up |
| Sex | All |
| Enrollment | 1500 (estimated) |
| Sponsor | Associazione Rete Italiana Mastocitosi Academic / other |
| Locations | 10 sites (Como and 9 other locations) |
| Status | Recruiting |
| Started | May 15, 2023 |
| Main results expected | May 2040 |
| Study ends | May 2040 |
| Registry record updated | November 4, 2026 |
| Trial ID | NCT07917156 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Adults (18 years and older) with a confirmed diagnosis of mastocytosis who can provide informed consent.
✕Probably not a fit
Patients whose disease course is atypical or who are not receiving specialized care may see limited immediate benefit from registry participation.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This is an observational registry collecting clinical and biological data from adults with systemic mastocytosis over a 10-year period. It includes retrospective and prospective data from multiple disciplines such as hematology, dermatology, and allergy, with no experimental treatment administered. The study aims to describe the natural history, treatment patterns, outcomes, and disease burden, and to estimate prevalence and incidence to support clinical management and data integration with other studies.
Why it matters
Potential benefit: If successful, clinicians may gain prospective data to inform individualized management and understanding of disease patterns in systemic mastocytosis.
How similar studies have gone: Registries in rare diseases like mastocytosis have previously helped characterize natural history and variability in care, though methods and scope vary by country.
Who can join: the full rules
Show full inclusion / exclusion criteria
INCLUSION CRITERIA Age ≥ 18 years Diagnosis of mastocytosis according to current WHO criteria. Ability to give informed consent according to ICH/EU GCP, and national/local regulations. EXCLUSION CRITERIA No exclusion criteria are expected.
Where it's running
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UOS Allergologia - ASST LARIANA
Como, Italy Recruiting -
Centro di Ricerca e Innovazione per le Malattie Mieloproliferative Università degli Studi di Firenze Azienda Ospedaliero- Universitaria Careggi
Florence, Italy Recruiting -
Asst Grande Ospedale Metropolitano Niguarda
Milan, Italy Recruiting -
Policlinico Irccs Ca Granda
Milan, Italy Recruiting -
Fondazione IRCCS Policlinico San Matteo
Pavia, Italy Recruiting -
sANTA MARIA DELLE CROCI AUSL ROMAGNA
Ravenna, Italy Recruiting
Show 4 more locations
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Uoc Ematologia E Trapianto Cellule Staminali Universita Cattolica Del Sacrocuore Fondazione Policlinico Universitario Gemelli
Roma, Italy Recruiting -
UO Diagnosi e Terapia delle Malattie Allergiche e del Sistema Immunitario A.O.U. OO.RR. San Giovanni di Dio e Ruggi D'Aragona
Salerno, Italy Recruiting -
Università degli Studi Ospedale Borgo Roma Policlinico G. B. Rossi
Verona, Italy Recruiting -
UO Allergologia Ospedale San Bortolo Vicenza
Vicenza, Italy Recruiting
Study contacts
- Study coordinator: Roberta Zanotti, Md
- Email: associazionerima@gmail.com
- Phone: +393332594320
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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Peripheral blood KIT-D816V testing in adults with systemic mastocytosis
This will test whether a sensitive blood test (ddPCR) can find the KIT-D816V mutation in adults with systemic mastocytosis so they might avoid a bone marrow biopsy.
-
Tracking mastocytosis from childhood to adulthood
This hospital registry will collect clinical, laboratory, and genetic information from children and adults with cutaneous or systemic mastocytosis seen in Pavia to see how the disease changes over time and what predicts outcomes.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.