Queiroz, Guilherme
Monteiro, Celdidy
Manco, Licínio
Relvas, Luís
Trovoada, Maria de Jesus
Leite, Andreia
Bento, Celeste
Funding for this research was provided by:
Fundação para a Ciência e a Tecnologia,Portugal (UIDB/00283/2020)
Associação Portuguesa de Pais e Doentes com Hemoglobinopatias
Forum Haematologico
Article History
Received: 4 August 2023
Accepted: 12 January 2024
First Online: 19 March 2024
Declarations
:
: This study was approved by the Ethics Committee of São Tomé e Príncipe, identified as CESIC Case PC022_2022.As the study is a population-based screening study, the research team decided to study only women of childbearing age, since they represent the group that can most benefit from a possible carrier diagnosis. Participants diagnosed as HbS carriers were guaranteed genetic counselling by Associação Filhos da Meia Lua Vermelha and, if possible, testing of their newborns. If the offspring is diagnosed with SCD at birth, clinical follow-up from the very first moment can improve the prognosis and quality of life of the patient. This ensures that the health information received by the participant corresponds to the proper response.All participants signed an informed consent form before participating in the study. In the case of underage women, the consent was signed by a legal representative.All data were anonymised by the first author and shared with the team in an aggregate form. Individual files and biological material are archived and protected in CIAS servers for 5 years, being destroyed thereafter.
: The authors GQ and CB are associates of Associação Portuguesa de Pais e Doentes com Hemoglobinopatias, and CM is head of Associação Filhos da Meia Lua Vermelha. CM and MJT work in Centro Nacional de Endemias da´República Democrática de São Tomé e Príncipe. LM and LR have no conflicts of interest. Their personal and professional involvement in the fight for sickle cell disease patients did not collide but enforced the methodological rigour and transparency of this study. The authors alone are responsible for the views expressed in this publication, and they do not necessarily represent the decisions, policies, or views of the government of República Democrática de São Tomé e Príncipe. CB has received honoraria from Arkray for a talk in a webinar. AL has received honoraria from Pfizer for a presentation at a scientific event.