The International Association of Relatives and People Affected by Lipodystrophy (AELIP), in its aim to improve the quality of life of people and families living with rare lipodystrophy, is going to develop a "Study of quality of life in patients affected by lipodystrophy and their families in Europe and Latin America.
The main objective is to know the impact that psychosocial aspects have on the health/quality of life of people affected by lipodystrophy and their families. This specific data and the results obtained have to play a fundamental role for our entity, allowing the implementation of actions aimed at improving the care of families who find themselves in this type of situation.
A total of 150 patients, both men and women, diagnosed with one of the subtypes of rare lipodystrophy and aged between 2 and 80 years, will be studied. All patients must give their consent to participate and, in the case of minors, the consent of their parents or legal guardians will be requested.
This study has been approved by the Research Ethics Committee of the Universidad Autónoma de Madrid. It is also supported by the Universidad Autónoma de Madrid, the Universidad de Murcia (Research group: Social Work and Social Services) and the Universidad de Almería (Research group HUM-852 Critical Studies on Communication). Among the researchers are Juan Carrión Tudela, vice-president of AELIP, José Jerez Ruiz, social worker of AELIP, David Araujo Vilar, professor of Medicine at the University of Santiago de Compostela, Antonio Bañón Hernández, member of the research group HUM-852 at the University of Almeria, Enrique Pastor Seller of the research and social work group at the University of Murcia and Miguel Ángel Ruiz Díaz, member of the research group at the Autonomous University of Madrid.
The research will be extended to people with lipodystrophy and their families in Europe and Latin America through the SF-36 questionnaire and a specific complementary annex on welfare and needs of people with lipodystrophy, developed by the AELIP research team.
These questionnaires will be administered telematically through a generic survey platform (GoogleForms, SurveyMonkey) and will be available in Spanish, English and Portuguese.
AELIP would like to thank PerMondo for helping our organization in all international initiatives by translating their texts through their collaborators free of charge.
The English version has been translated thanks to Lauren Burkinshaw
This English translation has been possible thanks to the PerMondo project: Free translation of website and documents for non-profit organisations. A project managed by Mondo Agit. Translator: Lauren Burkinshaw
The Portuguese version has been translated thanks to Camila D. Madeira and Nathan de Paula.
Translated into Portuguese in the scope of the PerMondo initiative (free translations of the web pages and documents for non-profit associations). Project directed by Mondo Agit. Translator: Camila D. Madeira; Proofreader: Nathan de Paula.