Banca de QUALIFICAÇÃO: FLÁVIA DINIZ MAYRINK

Uma banca de QUALIFICAÇÃO de MESTRADO foi cadastrada pelo programa.
STUDENT : FLÁVIA DINIZ MAYRINK
DATE: 10/07/2024
TIME: 14:00
LOCAL: microsoft teams (online)
TITLE:

Technological Protocol for Health Services Access According to Patients with Alkaptonuria demands for Incorporation into the Health System.

KEY WORDS:

alkaptonuria; health technology assessment; access to health services

PAGES: 55
BIG AREA: Ciências Sociais Aplicadas
AREA: Administração
SUBÁREA: Administração de Setores Específicos
SUMMARY:

According to the National Policy for Comprehensive Care for People with Rare Diseases, published in 2014, it is considered a rare disease that affects up to 65 people in every 100,000 individuals. Alkaptonuria (AKU) or ochronosis is an ultra-rare genetic disease with autosomal recessive Mendelian transmission, caused by mutations in the HGD gene, which causes a failure in the metabolism of the amino acids phenylalanine and tyrosine. Because it is an ultra-rare disease, health professionals know very little or almost nothing about the condition and there are few scientific articles and research on the disease. It remains for AKU holders and their families to use the information found on the Internet. There is no Clinical Protocol and Therapeutic Guideline (PCDT) available to guide patients, their caregivers and health professionals to the diagnosis and treatment of AKU. PCDTs are documents that establish criteria for the diagnosis and treatment of a disease or health problem. In this sense, it was intended to present a technological protocol of access to health services to patients with alcaptonuria, with suggestion of recommended treatment, with appropriate medicines and other products. The recommended dosage guidelines, clinical control mechanisms and monitoring and verification of therapeutic results are presented, to be followed by SUS managers. To this end, a descriptive research has been carried out, to present what has already been done, researched and studied on the subject, as well as exploratory research to present a model to be followed by SUS, in view of the scientific evidence and the criteria of efficacy, safety, effectiveness and cost-effectiveness of the recommended technologies. The product is a technological protocol with all the items necessary for the analysis of the Health Technology Assessment (ATS), including a description of the disease/health condition related to the use of the technology; the technology description, i.e., the drug to be used to manage AKU; description of scientific evidence for the technology (Systematic Review); presentation of the economic assessment study in the SUS’s perspective; budget impact analysis; and bibliographic references.

COMMITTEE MEMBERS:
Presidente - 1974898 - CAMILA ALVES AREDA
Interna - 1719905 - GRACE FERREIRA GHESTI
Externa à Instituição - KARIANE MENDES NUNES - UFOPA
Externo à Instituição - NATAN MONSORES DE SA - MS