Table 1.
Surveys included in the Global Prader–Willi syndrome (PWS) Registry launch, and the number of submissions per survey. The initial launch of the PWS Registry included 35 surveys. Surveys have been completed by varying numbers of participants.
| Survey Name | # of Participants |
|---|---|
| Getting Started | 1207 |
| Contact Information | 1074 |
| Participant Demographics | 969 |
| Research Trials | 959 |
| Diagnosis | 952 |
| Pregnancy History | 861 |
| Birth History | 821 |
| Biological Family History | 810 |
| General Medical History | 787 |
| Neurological History | 767 |
| Vision History | 756 |
| Developmental Milestones | 708 |
| Psychological and Mental Health | 682 |
| Speech, Occupational, and Physical Therapy | 654 |
| Sleep History | 613 |
| Pulmonary History | 609 |
| Gastrointestinal History | 605 |
| Sexual and Reproductive History | 603 |
| Dental History | 584 |
| Education and Employment | 582 |
| Endocrinological History | 573 |
| Dermatological History | 570 |
| Orthopedic History | 565 |
| Ear, Nose, and Throat Health History | 560 |
| Sociodemographic and Socioeconomic | 555 |
| Well–Being | 548 |
| Nutritional Phase and Diet | 547 |
| Medications–Endocrinology | 545 |
| Supplements A–M | 526 |
| Medications–Cardiology, GI, and Others | 520 |
| Supplements N-Z and Others | 511 |
| Medications–Psychiatric A–M | 509 |
| Medications–Psychiatric N–Z and Others | 502 |
| Hippotherapy, Psycotherapy, and Behavioral Therapies | 488 |
| Behavior | 428 |
| TOTAL | 23,550 |