Learn more about this rare disease, how it affects our families, and how we're helping to find treatment.
Observer Reported Toileting Abilities Survey (ORTAS)
We are inviting families in our rare disease community to help shape a tool that can better measure and understand the full range of toileting abilities within our rare disease community. By taking part in this pilot survey, you’ll be helping to ensure that future research reflects the real experiences and needs of our loved ones and create knowledge that can benefit our entire community.
There are 3 steps:
1) Email ORTAS@combinedbrain.org. You will be sent a link to sign a consent form.
2) Take the ORTAS (30 minutes to complete). You may specify someone else to also take the survey for the person you care for!
3) You will have the option to sign up for cognitive debriefing questions. We will select 10 participants. ORTAS will contact you to conduct a 10-15 minute interview, to share your experiences with taking the survey.