| Popis: |
Research can be driven by many motivations, curiosity in gaining knowledge, exploring the unknown, the quest for breakthroughs in understanding, and the joy of collaboration and problem solving. For those working in the area of health and intellectual disability, there is also the motivation of the potential to conduct research, which has a profound and meaningful impact on people’s quality of life. This is particularly the case for those researching fragile X syndrome, the most common inherited cause of intellectual disability and autism. But how do people who might be or are impacted by research related to Fragile X think about it? This chapter shall give some insights into the feelings, expectations and experiences of families affected by Fragile X. In order to gain information, an international survey has been carried out in ten countries, collecting the opinions of over 1,300 families about Fragile X research. |
