On behalf of Harmony Biosciences Patient Advocacy Team:
If you are the caregiver of someone diagnosed with Prader-Willi syndrome (PWS) aged 6 to 65 years and who also experiences daytime sleepiness, you and your care recipient may qualify for a 60-minute interview that will reimburse you $115 for your participation.
We want to hear about how your care recipient experiences the symptoms of PWS. We also want to hear your opinions on questionnaires used to study whether new medicines can help manage daytime sleepiness in people with PWS. Your experience and that of your care recipient, as well as your feedback, are important to us. This information may help inform how medicines for people with PWS are studied in the future.
By participating, you will:
- Provide information about the experiences of people with Prader-Willi syndrome
- Help us to understand if some questionnaires are suitable for use in future Prader-Willi syndrome clinical trials
- Potentially help patients with PWS in the future
Taking part is completely optional. We are looking for participants from diverse backgrounds and with different experiences. This means that not everyone will be able to take part; however, we will reply to everyone who contacts us.
You will be communicating directly with the Clarivate research team about the interview. Clarivate is running the study on behalf of Harmony Biosciences, a pharmaceutical company.
To learn more about how to participate in this study, please contact PWS@clarivate.com.