None listed
Conditions
Brief summary
This study aims to better understand rare heart conditions called infiltrative cardiomyopathies, which can cause heart failure and abnormal heart rhythms. We will follow people across New Zealand who have these conditions by reviewing information already collected during their usual medical care. The study seeks to understand how these diseases progress over time and how well current treatments work in real-world settings. We also aim to identify factors that may predict which patients are at higher risk of complications. The knowledge gained will help improve diagnosis, treatment, and long-term care for people with these conditions.
Interventions
The New Zealand Infiltrative Cardiomyopathy Cohort Study is a long-term observational study following people diagnosed with infiltrative cardiomyopathies. In the initial phase of setting up this cohort study we will firstly study the cardiac sarcoidosis and Fabry's disease population.
These conditions are uncommon and often difficult to diagnose, there is limited information about how they develop over time and how patients respond to different treatments. This study collects information alre
The New Zealand Infiltrative Cardiomyopathy Cohort Study is a long-term observational study following people diagnosed with infiltrative cardiomyopathies. In the initial phase of setting up this cohort study we will firstly study the cardiac sarcoidosis and Fabry's disease population. These conditions are uncommon and often difficult to diagnose, there is limited information about how they develop over time and how patients respond to different treatments. This study collects information already gathered during routine clinical care, such as medical history, symptoms, blood tests, and heart imaging (e.g., MRI or PET scans). No additional tests or procedures are required to take part. There are no questionnaires planned. We will observe their outcomes within 12 months of enrolment, at 5 years and then 10 years post-enrolment. Participants will be followed over the long term, allowing researchers to better understand how these diseases progress, how well current treatments work, and which factors may predict better or worse outcomes. Findings from this study will help improve diagnosis, guide treatment decisions, and support future research for people living with infiltrative cardiomyopathies in New Zealand.
Sponsors
Auckland City Hospital
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
Participants must meet all of the following: 1) Confirmed diagnosis of infiltrative cardiomyopathy (ICM) 2) Able to provide informed consent OR included via approved waiver (e.g., deceased individuals where consent cannot be obtained). 3) Diagnosis supported by clinical evaluation and investigations such as imaging, laboratory testing, or biopsy.
Exclusion criteria
Participants meeting any of the following will be excluded: 1) Provisional or unconfirmed diagnosis of infiltrative cardiomyopathy. 2) Insufficient clinical information to confirm diagnosis 3) Individuals who decline consent (for living patients).
Outcome results
None listed