**5. Conclusions**

Independence skills for patients with DS are varied; those used during a medical appointment could be improved. Skills of greatest importance should be the focus of future research and intervention.

**Author Contributions:** Conceptualization, S.L.S.; methodology, S.L.S.; software, A.T.; validation, A.T.; formal analysis, K.K., K.H. and S.L.S.; investigation, K.K., K.H. and S.L.S.; resources, S.L.S.; data curation, K.H.; writing—original draft preparation, K.K.; writing—review and editing, K.K., K.H., A.T. and S.L.S.; visualization, S.L.S.; supervision, A.T.; project administration, A.T.; funding acquisition, S.L.S. All authors have read and agreed to the published version of the manuscript.

**Funding:** This research was funded by NIH NICHD Eunice Kennedy Shriver, grant number K23HD100568.

**Institutional Review Board Statement:** The study was conducted according to the guidelines of the Declaration of Helsinki and approved by the Institutional Review Board of Approved by IRB of Mass General Brigham, formerly Partners Healthcare (protocol code 2020P003890 and 15 December 2020).

**Informed Consent Statement:** Patient consent was waived because the consent would be the only document linking patients to the research and the purpose of this is developing a baseline for future quality improvement goals.

**Data Availability Statement:** The data presented in this study are available on request from the corresponding author. The data are not publicly available because we did not notify survey respondents of data sharing at time of completing the survey, therefore, they did not explicitly consent to data sharing.

**Acknowledgments:** Appreciation is given to the Laboratory for Computer Sciences for creating the electronic intake form, and to Brian Skotko, the Director of the MGH Down Syndrome Program, for his leadership and foresight to implement use of this intake form.

**Conflicts of Interest:** The authors declare no conflict of interest. The funders had no role in the design of the study; in the collection, analyses, or interpretation of data; in the writing of the manuscript, or in the decision to publish the results.
