Purpose and Description of Research

Welcome to the PWS Connect Community and Research Initiative!

Thanks for your interest in joining the PWS Connect Community and Research Initiative founded on the belief that treating a chronic disease starts with understanding the people who live with it.

The group will mostly be comprised of people living with Prader-Willi syndrome (PWS) (or suspected to have the diagnosis), as well as, caregivers and care partners; however, other supporters may join from time-to-time or help moderate the community. All participants will be required to disclose their role for transparency.

The data collected will support our collective mission to accelerate scientific progress for the PWS community (see our Research for Good Statement below). We will share our insights with the PWS Connect group every step of the way!

If you would like to join, next you will sign a consent form and complete a short survey. The purpose of this short survey is to collect some basic demographic information as we create the accounts and build the private space on Discord. This information is not collected for, nor is it used for, any discriminatory purpose. Many of the questions have a 'prefer not to answer' option you can select if you are not comfortable. Other questions are required, but the responses will be kept confidential.

This survey data will be analyzed along with the insights generated from the conversations shared on PWS Connect to understand the community’s experience living with PWS. All personally identifiable information (PII) collected will be de-identified to protect your privacy while allowing researchers to analyze and share data. PII includes any information that can be used to identify a specific individual. De-identification involves removing or modifying these identifiers to reduce the risk of re-identification.

Once per year TREND Community will ask you to update your questionnaire. If you have any questions, please email research@trend.community. If you would like to speak to someone during business hours, 9:00am-5pm (EST) Monday through Friday, please call +1 215-259-8157.

In the next section, you will be asked to read the research participant information sheet and sign the consent form to participate in this initiative.