The pathway to diagnosis in Fabry
6 October 2022
Help us to understand the challenges patients with Fabry encounter during their diagnosis journey and where support is needed to improve this experience for Fabry patients and their families.
WHAT WILL I BE ASKED?
Rare Disease Research Partners have developed this online questionnaire to capture information about the time before you were given your Fabry diagnosis, including what symptoms you experienced and the doctors you saw.
WHO CAN TAKE PART?
The research is open to respondents who are 18 years old or over and who:
are patients with Fabry or their main caregiver
received their diagnosis of Fabry in 2012 or after
were not diagnosed following the diagnosis of a family member
have had their diagnosis of Fabry confirmed by a doctor
WHAT DO I NEED TO KNOW?
The online survey should take around 30 minutes to complete. In recognition of your time spent completing the questionnaire, RDRP will provide you with a payment of £25. No personal details will be shared and your answers will remain anonymous. The information you provide will be shared with the pharmaceutical company funding this survey.
To learn more about this research contact: firstname.lastname@example.org