Taking people in ItalyNo phase
Following people with spinal muscular atrophy over the long term
Records function, care and side effects in people with spinal muscular atrophy over time.
Plain-language title generated from the registry record
Registry title: Natural History of SMA
Key facts
- Where
- Genova, Messina, Milan, and Rome, ItalySee the 5 sites
Where in Italy
- Istituto GasliniGenova, ItalyTaking people
- Nemo SudMessina, ItalyTaking people
- Centro Clinico NemoMilan, ItalyTaking people
- Ospedale Bambino gesuRome, ItalyTaking people
- Policlinico GemelliRome, ItalyTaking people
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
- Fondazione Policlinico Universitario Agostino Gemelli IRCCS
- Trial code
- NCT05755451
- Record updated
- 6 March 2023
- Original description
This is an investigator initiated observational study with the aim to record several aspects of function, care and adverse events in a large cohort of SMA patients followed longitudinally by using a structured academic disease registry.Read full original descriptionShow less
Natural History of SMA: Long Term Longitudinal Study and Development of a Registry
This is an investigator initiated observational study with the aim to record several aspects of function, care and adverse events in a large cohort of SMA patients followed longitudinally by using a structured academic disease registry.
Inclusion: all patients.
Exclusion: if enrolled in clinical trials.