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.
Objective
The main objective is to understand the impact that psychosocial aspects have on the health/quality of life of people affected by lipodystrophy and their families. These specific data and the results obtained have to play a fundamental role for our entity, allowing to implement actions aimed at improving the attention of families who are in this type of situation.
This study has been approved by the Research Ethics Committee of the Universidad Autónoma de Madrid.
Furthermore, the study is 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)
SUBJECTS AND METHODS
SUBJECT:
A total of 150 patients, both male and female, 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, consent will be requested from parents or legal guardians.
METHODS:
The International Association of Relatives and People Affected by Lipodystrophy AELIP, will develop the quality of life study for 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, prepared by the AELIP research team.
QUESTIONNAIRES:
The questionnaires will be administered telematically using a generic survey platform (GoogleForms, SurveyMonkey)
and will be available in Spanish, English and Portuguese.
ACKNOWLEDGEMENTS:
AELIP, would like to thank PerMondo for helping our organization in all international initiatives by translating their texts through their collaborators for free.
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.
