Drug development for PWS faces numerous challenges including a limited patient population that impacts clinical trial recruitment. Currently, only a limited number of clinical sites are involved in conducting the vast majority of PWS clinical trials across the country. Unfortunately, this limits geographic coverage and likely results in a smaller patient pool for these trials. Our goal is to develop a PWS Clinical Site network to ensure that participants across all geographic areas of the United States and Canada have an opportunity to participate in clinical trials. In addition to increasing the overall size of the patient base, this will also allow institutions that are caring for PWS patients to participate in clinical trials or studies.

FPWR has developed a PWS Clinical Site database to help advance clinical research studies and clinical trials by connecting clinical sites that have experience with PWS with pharmaceutical companies and research centers. By providing a common platform, the network makes it easier for drug companies and research centers to quickly find the patient population and determine site capabilities to conduct clinical studies or trials. The database will help build a network of PWS clinicians both in the US and Canada, which in turn will benefit the PWS patient community by increasing their access to clinical sites.

The database consists of an online comprehensive questionnaire for investigators who will be performing clinical trials and/or clinical research. The information derived from the questionnaire allow us to provide the sponsors with critical information regarding clinical trial sites and care management capabilities including: administrative and site details, contract and IRB requirements, site experience, laboratory resources and equipment available for clinical trials, patient care for clinical trials, clinical trial efficiency, project management, data collection capability, PWS care management, availability and experience of PWS specialists, and patient demographics.

For clinicians interested in joining the database, we would be very grateful if you could register and fill the online questionnaire as accurately as possible. You will need to register using the following link: http://fpwrclinicalsites.org/registration. Once you registered, you will receive an email with the link to fill the questionnaire. You can save and get out of the database and go back to it at any time. Please note that only one questionnaire should be completed per clinical site. Your data will be visible only to you and FPWR. Your questionnaire will be shared with potential sponsors if your site corresponds to their eligibility criteria. In this case, the sponsor will contact you for further discussion.

For industry sponsors interested in identifying clinical sites for clinical trials or research, please contact Caroline Vrana-Diaz, PhD (caroline@fpwr.org) or Nathalie Kayadjanian, PhD (Nathalie.kayadjanian@fpwr.org))