BackgroundRegistry Ethos
"The Registry must be independent of institutions."
This statement, taken from the original funding proposal submitted to the Department of Health and Children, underpins the entire ethos of the CFRI.
Other words which describe the concept of the Registry are:
- Independent
- Confidential
- Responsible
No institution shall 'own' the Registry; its ownership is in the hands of its constituent members: a type of collective ownership. Each enrolee owns his own information and can control whether that is entered into the database through signing a consent form.
Each patient may have access to their own Registry records. Anyone who is enrolled in the CF Registry may apply to the Chief Executive for a copy of their own information.
