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(DICE-APER)

WELCOME TO THE PROTOCOL DICE OF PRIMARY CARE OF RARE DISEASES

WHAT ARE RARE DISEASES?

Rare Diseases (RD) are, in general, a group of very diverse chronic diseases characterized by low prevalence (less than 5 per 10000 inhabitants), high morbidity, and early mortality. In addition, their low prevalence has conditioned until very recently the research around them is scarce and the treatments in most cases nonexistent. It is understood, therefore, that patients who suffer from them have special needs not yet covered. Health institutions are becoming aware of the dimensions of the problem, which in our country affects about 3 MILLION INDIVIDUALS.

DICE-APER PROTOCOL GOALS

1.- Diagnosis (D): Identify people who have a diagnosis corresponding to one of the rare diseases described, or are under study or suspicion of having it. This identification immediately entails the safeguarding of this information in the doctor’s own system of consultation (Primary Care data base on paper or computer application)

 

2.- Information (I): Provide basic information and patient support, based on existing resources in patient organizations and administration.

 

3.- Coordination (C): Contribute to the care coordination that each patient demands, establishing the necessary links between the primary care physician and the medical service specialist of that disease.

 

4.- Epidemiology (E): Provide information to the health system on the dimensions of the problem, facilitating that the patient can be add to the registry of people with rare diseases of the ISCIII and contributing to the investigation through the donation of a blood sample for the biobank of ISCIII.

 

THIS WAY BASIC OBJECTIVES WILL BE COVERED TO FACILITATE PATIENT CONTROL AND MANAGEMENT, WHILE WE WILL BE ABLE TO TURN THIS FACET OF PRIMARY CARE IN AN EXPORTABLE ASSISTANCE MODEL TO THE REST OF EUROPE

WILL IT INCREASE MY WORKLOAD?

This protocol is not intended to create more workload. On the contrary, what is sought is to organize, in a logical way, those tasks that could be covered by primary care physicians in relation to their patients affected by rare diseases. Its objectives should be developed under simple activities that take the least amount of time for the physician, but which in return allow him to be flexible over time, so that the doctor himself assumes the management of visits and times and decides what to do in every moment. Obviously, the first point (SEARCHER) is considered key and therefore must be the first and axis of all the rest of the actions. The rest of the activities that are presented below in the form of an action protocol for Primary Care must be managed by the physician according to the workload of the moment and without losing sight of the final DICE-APER objectives

WE ALL HAVE IN OUR PRACTICE AROUND 10 TO 15 PATIENTS WITH SOME RARE DISEASE. THIS PROTOCOL DOES NOT HAVE TO BE A HARD TASK OR SOMETHING THAT OVERLOAD OUR NORMAL ACTIVITY. BUT IT IS OUR RESPONSIBILITY TO FULFILL THIS PROTOCOL WITH ALL OF THEM SO THEY CAN HAVE THE RIGHTFUL ATTENTION THEY DESERVE