Asociación AELIP

Dear families, people affected and associations that work in the field of Lipodystrophy:

The Association of Families and People Affected by Lipodystrophy AELIP, as part of its aim to improve the quality of life of people and families living with a rare lipodystrophy, is going to develop a "Study of the quality of life in patients affected by lipodystrophy and their families in Europe and Latin America".

The main objective of this study 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 will play a fundamental role for our entity, allowing us to implement actions aimed at improving the assistance provided to families who find themselves in this type of situation.

A person determines their own Quality of Life based on the state of his/her health as compared to certain standards built upon what he/she expects to be able to achieve. Despite the different perceptions that each affected person has about their quality of life, we must not forget that rare Lipodystrophies imply a reduction in quality of life, so it is vitally important to study them using this approach.

Your support will allow us to give people living with rare lipodystrophy and their families a voice, to understand their needs and to make specific proposals in the social, family and educational fields, to name a few.

AELIP will keep you informed of the results we achieve.

Please could you complete the attached questionnaire and share it with other affected people and families that you know.

I sincerely thank you for your support.

Signed: Naca Eulalia Pérez de Tudela Cánovas.

AELIP PRESIDENT

STUDY OF THE QUALITY OF LIFE IN PATIENTS AFFECTED BY LIPODYSTROPHY AND THEIR FAMILIES IN EUROPE AND LATIN AMERICA

RESEARCHERS: 

1. Juan Carrión Tudela (Vice President of AELIP)
2. José Jerez Ruiz (AELIP Social Worker)
3. David Araujo Vilar (Professor of Medicine at the University of Santiago de Compostela)
4. Antonio Bañón Hernández (Research group HUM-852 of the University of Almería)
5. Enrique Pastor Seller (Research and Social Work Group of the University of Murcia)
6. Miguel Ángel Ruiz Diaz (Universidad Autónoma de Madrid Research Group)

CENTER: 

International Association of Relatives and People Affected by Lipodystrophies AELIP

This document is intended to provide you with information about a research study in which you are invited to participate. This study was approved by the Ethics Committee of the Universidad Autónoma de Madrid. If you have any questions or need clarification, please do not hesitate to contact us. Participation in this study is completely voluntary. You may decide not to participate or, if you accept, you may change your mind at any time by withdrawing your consent, with no obligation to provide explanations.

What is the purpose of the study?

The aim of this study is to find out the impact that psychosocial aspects have on the health/quality of life of people affected by Lipodystrophy and their families. 
This information collection will also be done in other associations in different European countries, in order to get a large sample of patients that can give a reliable view of the impact of these diseases.

Why do you offer me to participate?

You are invited to participate because you (or your child) have been diagnosed with rare lipodystrophy.

What does my participation consist of?

You will need to complete this survey, the link to which has been sent to you through the following communication channels: e-mail, WhatsApp or social networks, and your personal information will not appear in the survey. The time you will spend on this survey is approximately 10 minutes.

What are the drawbacks?

Your participation does not imply any additional inconvenience.

Will I get any benefits from participating?

You are not expected to gain any direct benefit from participating in the study. The research is aimed at discovering unknown or unclear aspects of rare lipodystrophies. This informationn may be useful for other people inn the future.

Will I receive the information from the study?

Yes. If you wish, you will be given a summary of the study results.

These results may have no clinical application or clear interpretation, so if you want to have them, you should discuss them with the doctors involved in the study.

Will the results of this study be published?

The results of this study will be sent to scientific publications for dissemination, but any data that may lead to the identification of participants cannot be transmitted and only aggregate information will be used. The information in the questionnaires will be dissociated from the personal data by means of a random code so that it is not possible to identify the person who has answered.

All the information will be kept by the researchers following the requirements of the Data Protection Law (Organic Law 3/2018 of 5 December on the Protection of Personal Data and the guarantee of digital rights) 

ACCESS THE QUESTIONNAIRE IN ENGLISH https://forms.gle/dLKDH3My2jzPNfym7

ACCESS THE QUESTIONNAIRE IN SPANISH https://forms.gle/HUtpcpR1ULqvdV25A

  ACCESS THE QUESTIONNAIRE IN PORTUGUESE https://forms.gle/PKf9d9VcnjG4RHnF8