The HI Global Registry Objectives are:
- Provide a patient-friendly online platform for participants to share information about HI.
- Document the natural history of the disorder that tracks the individual patients’ experience over their lifetime. Understanding the natural history of HI will lead to potential new treatments and improved quality of life.
- Improve knowledge of how often HI and other health issues associated with it occur. Clarify the role of timely diagnosis of HI on patient developmental outcomes.
- Provide a better understanding of patient health outcomes relative to different HI treatment options, settings and provider types.
- Identify both positive and negative effects related to different HI treatment options.
- Support the evolving standards of care of HI patients using natural history and outcome information from a global perspective.
For further information on the HI Global Registry please view the registry study communication material, and feel free to contact the CHI team with any questions or concerns you may have. Thank you for your interest and support with this incredibly important research initiative.