Epidemiological Data Resource CenterFireflower has developed an anonymous, highly detailed and exhaustive, Personal Profile Data (PPD) survey service to collect information from patients suffering from specific diseases, or who have specific allergies, or who have had adverse reactions to specific drugs. Anonymised personal information, relating to a person’s life history, life style and life quality is seldom available to researchers, and almost never in a way that it can be tied to groups of patient’s medical records anonymously. Using Fireflower, researchers can look for correlations in a multiplicity of patient records, and try to tie correlations to diverse factors. Researchers need this type of information to find the causes of certain devastating diseases and to set up prevention strategies, or at least find better therapies along the way. Fireflower PPD can collect this data on a global scale. Fireflower will work with universities, teaching hospitals and clinics around the world to collect the data from guaranteed patients or their family members. The importance of collecting details about family and personal history, life style and the life quality of sufferers will be explained to patients by their doctors or other health care providers. They will be asked if they would like to contribute their own data for specified research purposes only, and if they consent, they will be asked to sign a consent form. Thereafter they will be given a password to log-on to a web-site on the internet, so they can set their own password. Then provide their information in their own time, using forms in their own language. They will not be able to provide any personal contact information - their PPD data will be anonymous and will not be seen even to their own family doctor. All that Fireflower will know is that each patient is a genuine patient who has signed a consent which is has been provided by a hospital or clinic. Fireflower will begin collection of data, in English and Chinese, from patients in November 2007. |