Creation of Registries

CF Specialist centres are successful primarily because larger numbers of patients attend them. Medical staff become very familiar with the condition and they are more likely to anticipate clinical problems before these problems manifest into serious events. The question then arises, "What if all patients' clinical data and information (from the entire country) was available for study?" This would increase the patient numbers available for analysis and this may further enhance patient care.

Computers and the internet make the concept of analysing large amounts of patient data achievable. So, the logical next step is to put everyone's records together, creating a "virtual clinic". It is still advisable to keep peoples treatment in separate specialist centres, but put their key information from hospital charts into one filing cabinet (data bank). That way, one can analyse everyone's treatment and compare the differences. When comparisons are made between different treatments, a general principle holds: the larger the numbers of patients, the better the conclusions that can be drawn from the data.

This principle, "large numbers - strong conclusions" holds for all medical and scientific studies. Large numbers of patients in a clinical trial can facilitate the finding of small differences between treatments. Let us take, for example, two sets of patients who have the same infection and are on the same antibiotic but at two different dosages levels. It may be found that the patients on the lower dose do just as well as the patients on the higher dose. This finding would be important because it is generally accepted that it is better to treat infections with the lowest effective dose of an antibiotic. That finding could then be used as the basis for the creation of a clinical practice guideline (i.e., use the lower dose) for all future cases of that same infection. But this type of proposal would not be possible unless many, many infections in many, many patients were studied. So, it is important to gather as much information as possible from as many people as possible in order to create clinical practice guidelines.

This is where the concept of a Registry comes into play. Computer programmes called databases can hold large numbers of patient records. They can then be used to analyse those records very efficiently and answers to clinical questions can be virtually "at the touch of a button". If there is enough information gathered together in one computer, then that information can be used very effectively to answer key questions such as "What is the best antibiotic for the treatment of infection A?"

Doctors from different regions of a country submit medical information on their own patients to the central computer. They can request reports that show the results of treatments on other doctor's patients. They are not able to see the other patients' names or addresses, but they are able to see, for example, which antibiotic has been useful for treating a particular infection.

Clinical practice guidelines or 'best-practice guidelines' are publications which bring together the best results of different treatment strategies. They can be used by doctors and nurses in facilities everywhere and are especially helpful to those working in centres where the number of patients is small. The smaller centres can thus benefit from the results of large centres and the standard of care is thus deemed to be similar for all patients.

Cystic Fibrosis registries gather information on all aspects of a patient's condition. This includes medical information, physical therapy techniques, nutritional information, transplant status, social information, and general indicators of well-being. Because the registries are so broad in scope, many studies on different aspects of treatment may be done with the information that is contained in them.

The creation of patient Registries ("electronic filing cabinets" or databases which hold patient data) began in the US and Canada in the early 1980's. Europe followed suit in the 1990's with registries in the UK, Germany, Denmark, France, etc. To date, many studies about CF treatment(s) have been carried out by tapping into the information stored in these registries and some very important findings have been published.