Real World Data Workshop Application |
Workshop Description
Real World Data Research Readiness
Engaging the Prader-Willi Syndrome Community
Real World Data (RWD) – refers to mobile technology (apps), wearable devices (eg., ‘fit bit’), electronic health records, registries, and other electronic databases. RWD technologies provide new opportunities for transforming biomedical research.
The goal of the Real World Data Research Readiness Workshop is to explore how RWD can be used to better understand PWS, and how it can be incorporated into clinical trials to measure outcomes that are important to individuals with PWS and their families.
Who are we looking for to participate?
FPWR is seeking a group of participants that represents the diversity of families impacted by PWS. This includes socio-demographic, socio-economic, age, geography, current living situation, and other criteria. Participants should be interested in learning about the concepts and application of real world data, and be prepared to draw on and share their experience and knowledge of living with PWS.
What does participation involve?
Selected participants will attend two Real World Data sessions in Providence, RI, on Sunday, October 30th (9am - 12:30pm). Participants will actively engage and contribute in workshop discussions and collaborative brainstorming sessions. Participants will receive $100 compensation for their time and perspective.
How will applicants be chosen?
Workshop participants will be selected in order to create a group that is representative of the PWS community. Note: the demographic data included in this survey will be deleted following the selection of participants.
Engaging the Prader-Willi Syndrome Community
Real World Data (RWD) – refers to mobile technology (apps), wearable devices (eg., ‘fit bit’), electronic health records, registries, and other electronic databases. RWD technologies provide new opportunities for transforming biomedical research.
The goal of the Real World Data Research Readiness Workshop is to explore how RWD can be used to better understand PWS, and how it can be incorporated into clinical trials to measure outcomes that are important to individuals with PWS and their families.
Who are we looking for to participate?
FPWR is seeking a group of participants that represents the diversity of families impacted by PWS. This includes socio-demographic, socio-economic, age, geography, current living situation, and other criteria. Participants should be interested in learning about the concepts and application of real world data, and be prepared to draw on and share their experience and knowledge of living with PWS.
What does participation involve?
Selected participants will attend two Real World Data sessions in Providence, RI, on Sunday, October 30th (9am - 12:30pm). Participants will actively engage and contribute in workshop discussions and collaborative brainstorming sessions. Participants will receive $100 compensation for their time and perspective.
How will applicants be chosen?
Workshop participants will be selected in order to create a group that is representative of the PWS community. Note: the demographic data included in this survey will be deleted following the selection of participants.
Click below to get started with the application!