We invite you to explore the results of the survey summarized below. <\/p>\n\n\n\n A total of 94 families from around the world participated in the survey \u2013 showing strong global interest in participating in clinical trials. The majority of responses came from Europe and North America. Overall, 91% of participants were caregivers or parents of boys, and 9% were caregivers or parents of girls. The children represented in this survey range in age from 0 to 34 years old. <\/p>\n\n\n\n Regardless of sex, age, or geographical distribution, the majority of respondents (77%) expressed strong interest in enrolling their child in a clinical trial. Meanwhile, 19% were undecided, and 4% did not wish to participate. <\/p>\n\n\n\n To better understand what influences this interest, families were asked to identify the key factors they consider when deciding whether to enroll their child in a clinical trial. The most frequently selected concern was the risk involved in the treatment or procedure (chosen by 86 out of 94 respondents, 91%). The potential benefit of the treatment followed closely behind (77 out of 94 respondents, 82%). Location of the trial (60 responses, 64%), support for travel and accommodation (47 responses, 50%), and trial duration (37 responses, 39%) were selected less frequently. <\/p>\n\n\n\n Conclusion<\/strong><\/p>\n\n\n\n The results of this survey provide valuable insights into the perspectives and priorities of families affected by MECP2 Duplication Syndrome. Risk and potential benefit were the most important factors guiding decision-making, while logistical aspects like location, travel, and trial duration \u2013 though less critical \u2013 remain important considerations. <\/p>\n\n\n\n While ATTUNE and HERO trials are currently collecting first-in-human data, we are hopeful that some of these questions and concerns will be addressed over time. <\/p>\n\n\n\n In the meantime, our community must already prepare for what comes next. If early trial results are promising, broader participation will be essential for later-phase studies and global access. This survey was designed to support that preparation \u2013 by understanding where families are, what support they need, and how willing they are to take part. <\/p>\n\n\n\n This survey is more than just data; it is a reflection of a committed and globally connected community, ready to take the next steps toward progress. ![\"\"](\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2025\/06\/Geographical-distribution.jpg\")
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Despite differences in age, sex, and geography, a strong majority of families expressed interest in participating in clinical trials. <\/p>\n\n\n\n
For families who have not yet participated, the survey is still open. It's never too late to make your voice heard and help shape the future of clinical research. <\/p>\n\n\n\n