Comprehensive Care in Minority Diseases. Case managers

Access requirements

Graduates in Nursing, medicine, pharmacy, psychology, nutrition or in other fields of health sciences (to be assessed by the Academic Committee)

Pre-registration

You can consult a manual of the admission procedure on the CEP website in Archive or by clicking here
To apply for admission, go to the following link of the virtual secretary
https://matricula.usc.es/Posgrao/SolicitudeEstudosPropios

Access to pre-registration and registration

Selection system

Academic record-50% Hospital professional experience-20% Studies and research in the areas of the title profile 20% other merits of the curriculum 10%

Objectives

General objectives:
1. Promote the development of homogeneous criteria to optimize and guide the management of minority/rare diseases, offering more efficient and coordinated management to patients and families.
2. Provide a global perspective of rare diseases in all stages of life.
3. Illustrate advances in the diagnosis, treatment, management and research of rare diseases and in particular of inherited metabolic diseases.
4.- Acquire skills in the management of cases of rare diseases that include: screening programs, information, scope and sample management; information regarding genetic testing (informed consent); approach to the interpretation of diagnostic genetic tests (genetic information); introduction to genetic counseling and reproductive options; obtaining clinically relevant data through surveys; records based on data derived from clinical follow-up; participation in clinical trials; identification of poor therapeutic adherence and intervention; training/coaching and support [diet, physical activity and lifestyle]; management and administration of medications with a high economic cost; detection and action in emergency situations; management and design of emergency kits adapted to each patient; participation in associationism and related activities.
Potential Benefits:
-Achieve better care and management of the health conditions of the disease itself and those that are associated and derived from it.
-Reduce the impact of minority/rare diseases on patients, their families and caregivers, as well as on society.
- Improve the health, quality of life and life expectancy of the patient, child or adult, with a minority/rare disease.
-Increase the participation of patients in their community, places of study or work and in socio-community life.
-Facilitate the transition between pediatric and adult health care.
Specific objectives:
Module 1
1. Know the main rare diseases.
2. Know the main types of records in rare diseases.
3. Understand the new diagnostic techniques of massive sequencing.
4. Relevance of neonatal screening and management of its results.

Module 2
1. Have a global perspective of dietary and nutritional therapies in rare diseases and in particular in hereditary metabolic diseases.
2. Know the patterns of action of metabolic decompensation.
3. Know the new therapies in metabolic diseases and the current situation of gene therapy in rare diseases and the new trials in early phases launched.

Module 3
1. Promote knowledge for patient access to highly specialized, safe health care with high quality indices.
2. Promote knowledge of high-resolution consultations, which allow consultations and complementary tests to be concentrated on the same day:
3. Coordination of adolescent to adult transition. Improve the detection circuit for rare diseases between primary care and specialized care
4. Training and management in therapeutic adherence.
5. Provide information on new therapies through clinical trials with potential utility for each pathology and channel, where appropriate, access to them.
6. Understand the importance of involving patient and family associations in the global care process, attending to and accommodating their needs and demands.

Career options

Methodology:
The course is made up of 5 modules or didactic units that are progressively accessed, depending on how the previous one is passed. Near the end of the course there will be a 10-hour face-to-face session, divided into an afternoon session and a morning session, of updates from the Teaching Units focusing specifically on case management. The duration of the Course is 6 months and 95% of the credits are in online format, which allows the student to organize himself properly to develop it at the pace that suits his possibilities.

Evaluation

The evaluation of the student's learning process will take into account the general progress of the student through the development of the different evaluative elements of each subject.
The result of the evaluation will be expressed as pass/fail

Tutoring

online

Online en su mayor parte

Observations

El 96,67% de la docencia será online. El 3,33% será presencial, en un lugar en Santiago de Compostela y probablemente en el mes de julio

Code	Subject	Credits
1	Diagnosis Of Minority/rare Diseases.	8.0
2	TherapeuTIC Tools In Minority Diseases.	7.0
3	Welfare Management Of Rare/minority Diseases.	8.0
4	Case Management In Minority / Rare Diseases: Clinical Care And Family Aspects.	2.0
5	.	5.0