A patient registry is a database that collects information on a wide population of individuals with a specific health condition. Registries are primarily used to advance research and strengthen the knowledge base about a condition within the scientific and research community, thereby contributing significantly to drug development efforts. Some registries can be quite simple records with basic information on patients or incredibly complex and sophisticated databases which are accessed across multiple institutions. Registries are very helpful in obtaining accurate information on patients and are especially crucial for rare syndromes such as KS in which the patient population may be small (approximately 300). The information in the registry requires support from the parents or guardians of KS and participation ideally would extend to all countries in which there are patients. Over time, this information will be shared with researchers, clinicians, pharmaceutical companies and others involved in searching for more information to advance patient outcomes.
To begin, we ask that you complete the following:
- KS Basic Contact Form (KS Patient Database). This is a brief survey to build our basic database of and contact info for KS patients and families. You can complete this in only a few minutes
- KS Detailed Patient Data (KS Patient Registry). This is our detailed questionnaire referenced in the paragraphs above