Metab-Latam: Sharing of Scientific Knowledge in Inborn Errors Of Metabolism

Background: Metab-Latam is a multidisciplinary group created in 2020 with the goal of reuniting professionals involved in medical care, investigation, or education in inborn errors of metabolism (IEM) in Latin America, and promoting the debate and the sharing of knowledge of IEM in an accessible way through social media. Group activities started with an open mailing list, with a focus on sharing events and scientific Latin-American publications communicating in Portuguese and Spanish. Afterwards, the group expanded to social media.

Methods: The online mailing list was created in 2020, and at first, participation was requested by e-mail, with candidates required to agree to the rules of participation and answer a brief questionnaire about demographics and potential conflicts of interest. A public content creator profile was created on Instagram (IG) in April of 2021 (https://www.instagram.com/metab.latam/). Weekly posts were planned in Portuguese and Spanish, scientific publications of IEM produced by Latin-American authors, and posts to share events related to the topic and ongoing works. Currently, to participate in the mailing list, you need to access the link available in the Instagram biography and complete a questionnaire. After the answers have been revised, the solicitor´s email is included in the list to receive emails and participate in discussions. The participants can share information, files, publicise and promote events and discuss the latest advances in IEM.

Results: Currently, the mailing list has 146 people registered (66,03% are women), mainly medical doctors from Brazil (23.58%), Argentina (25.47%), Colombia (14.15%), México (12.26%) and other Latin-America countries: Paraguay (2.83%), Chile (%), Uruguay, Costa Rica, Ecuador, and Guatemala (1.88% each), and Peru (0.94%). Other participants were from the United States (4.71%) and Europe (3.77%). In 2022, the median number of 14 e-mails per month were sent (186 in total) and six clinical cases were discussed regarding the diagnosis and treatment of patients with IEM. Also, 35 events related to IEM were publicised. Twenty-three posts were created on Instagram in 2022 publicising 16 scientific publications and 7 events selected by the group. From August to November of 2022, the profile reached 402 accounts, most of them Brazilian (67.9%), from the United States (4,8%), Colombians (3.3%), and Argentinians (3%). The age range varied between 25 to 64 years old and.82,7% of the visitors were women. Of the Brazilian accounts, 13.5% were from Porto Alegre/RS, 5.6% from São Paulo/SP, 5.8% from Rio de Janeiro, and 2,5% from Belem.

Conclusions: In little more than one year, the social media profile in association with the mailing list allowed a greater reach in an accessible and democratic way to clinical and laboratory knowledge related to the diagnosis, treatment and care of patients with IEM, in addition to encouraging the association between colleagues via events. Presently, the group´s objective is to increase the profile´s reach even more, focusing mainly on Latin-American Spanish-speaking countries with more interactive content and increased publications.