BEAWARE - Survey of patients with selected rare diseases to identify essential and generally valid patient characteristics and relevant symptoms of patients with rare diseases in the emergency department
- Conditions
- Rare but treatable diseases in adults and adolescents in emergency medicine
- Registration Number
- DRKS00033032
- Lead Sponsor
- Zentrale Notaufnahme und Aufnahmestation Charité - Universitätsmedizin Berlin am Campus Benjamin Franklin
- Brief Summary
Not available
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Complete
- Sex
- All
- Target Recruitment
- 151
Inclusion Criteria
Informed patient consent and, for minors, additional consent from a legal representative.
Diagnosis of one of the following rare diseases:
- Porphyria
- Thrombotic thrombocytopenic purpura
- Hereditary angioedema
- Familial Mediterranean fever
- Fabry disease
- Urea cycle defects
- Paroxysmal nocturnal haemoglobinuria
- Fatty acid oxidation defects
- Myasthenia Gravis
- Hereditary haemorrhagic telangiectasia
Exclusion Criteria
Premature termination of survey.
No informed consent.
Study & Design
- Study Type
- observational
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Capture and characterise common characteristics of rare disease patients in emergency departments.
- Secondary Outcome Measures
Name Time Method Create a scientific basis on which recommendations for identifying patients aged 16 and over with rare but treatable diseases in the emergency department could be developed, based on the variables (such as symptom and patient characteristics) that may be identified.