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Ability to toilet independently is consistently ranked as having one of the biggest impacts on daily life by people with neurological disorders and their caregivers. However, there is no standardized way to measure the ability to toilet independently. We need a sensitive and accurate outcome measure to measure changes in toileting abilities. This is especially important as new therapies are being developed for neurological disorders that could improve the person’s ability to toilet independently.


Toileting is a complicated task! 

To go to the bathroom, you need to…

  1. Realize that you need to go to the bathroom (sensory and cognition)
  2. Indicate to caregivers that you need to go (communication)
  3. Pull down/unzip pants (fine motor)
  4. Stay on the toilet while going (gross and fine motor)
  5. Use toilet paper (motor planning and coordination)
  6. Flush (Fine motor and cognition)
  7. Wash Hands (cognition, fine motor)


The Observer Reported Toileting Assessment Survey

COMBINEDBrain has developed a toileting survey to assess how well people with neurological disorders can use the toilet on their own. This survey is based on a previous toileting survey developed for Mucopolysaccharidosis type II (MPS II) and similar disorders. (Hogan et al., Mol Genet Metab Rep, 2020) 

Progress During Phase I (2023-2025):

  • We developed of survey questions with input from key opinion leaders to create the “ORTAS 1.0,” which included: 

   - Medication questions

   - Medical history questions

   - Gastrointestinal symptom questions
   - Toileting Question


  • 200 ORTAS 1.0 surveys were completed from:

   - Caregivers of people with neurological disorders
   - Caregivers of neurotypical control children (age 1-7)
   - Adults who have neurological disorders and can answer for  themselves
   - Non-primary caregivers of people with neurological disorders or neurotypical control children

  • Completed structured interviews of 18 caregivers.
  • Updates to the ORTAS 1.0 survey questions based on interview responses.

Progress During Phase II (2026 - Present)

  • We released the ORTAS 2.0 to a broader audience

  • The ORTAS 1.0 results were analyzed

  • We're preparing a publication of a manuscript on developing the ORTAS


How can I get involved?

Sign up for the ORTAS! We want survey responses from everyone, at all ability levels!

  • Caregivers of people with neurological disorders
  • Caregivers of neurotypical control children (age 1-7) - We are in need of more controls!!!
  • People who have neurological disorders
  • Nonprimary caregivers of people with neurological disorders or neurotypical controls

Contact us: ORTAS@combinedbrain.org



COMBINEDBrain is a 501(c)(3) consortium devoted to helping find cures for rare neurological disorders. EIN 83-1825692

1510 Old Hickory Blvd

Brentwood, TN 37027

 (844) 867-9266

info@combinedbrain.org


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