One way to determine if each different type of sex chromosome variation has distinctly recognizable facial features is by using sophisticated facial recognition software. This distinction could, in time, lead to an earlier diagnosis.
Parents would be asked to submit electronic facial images of their children (affected children at different ages) and share their chromosome findings but no other protected health information. We would try to define the facial features for each type of sex chromosome variation and study the facial features over different ages, through a private online portal that could be made available to the support group.
This online portal includes an informed consent section, and directions for patients or their families to submit photographs. Affected boys and girls with extra sex chromosomes would be the primary study group. All submitted photos will be then transferred to the Face2Gene account of the geneticists or clinicians working with AXYS or the principal investigator for this study. Once sufficient numbers of photos have been submitted, FDNA would run an analysis on the different groups of photos to determine whether there are distinct gestalts and how these gestalts change over time. AXYS could share the portal’s online address and access code with your members, through the website, newsletter, social media, etc. We have set up such a portal for you to experiment with:
Access code: cucumber
Families need to “sign” that they have read and understood the content of this page. If families do not wish to state their real names or email, they are also free to do so.