Milestone Study: Help Advance research in Phelan-McDermid Syndrome
Caregivers of individuals with Phelan-McDermid syndrome (PMS) are invited to participate in an online research study of developmental milestones. Participation is remote and compensation may be provided for completing study-related surveys (up to $1,000).
About the Study
This research study aims to better understand how developmental milestones, or skills, change over time in individuals living with Phelan-McDermid syndrome. Understanding how skills are gained, lost, or regained helps researchers better understand PMS. The input from this study may help inform further research and potential treatments in the future.
Why Your Participation Matters
Caregiver insights provide valuable real-world information that helps researchers understand which developmental milestones are most meaningful to families. This knowledge helps guide future treatment research and support programs. As a caregiver, your insight is essential to understand the natural history of PMS.
Fully Remote Participation
All study activities take place online. Surveys can be completed from home and saved to finish later at your convenience.
Eligibility
You may qualify if:
You are an adult (legal age of majority in your state) and are a caregiver of someone with Phelan-McDermid syndrome
You are willing to complete an online survey at three time points over the next 12 months
You are willing to share developmental milestone information and documentation when available
Your loved one is between ages 2 and 30
You can complete surveys in English
Final eligibility will be determined by the study team based on study requirements.
Participation
What to Expect:
Complete a Short Screening Online: Answer a brief online questionnaire to determine whether you may qualify.
Provide Consent: If eligible, you will review study details and provide electronic consent before participating.
Complete the Baseline Survey: Complete the first online survey about your loved one’s developmental milestones. The survey can be completed over multiple sessions.
Follow-Up Surveys: Complete two additional surveys, the first approximately 6 months after the baseline survey and the second approximately 12 months after the baseline survey, to track developmental changes.
Receive Compensation: Compensation is provided after the completion of each study-related survey (up to $1,000)
Learn more about the study and check your eligibility at this website.
