Participants with the highest probability of having RBD and no signs of neurodegenerative disease undergo a sleep assessment by either polysomnography in the sleep laboratory in a hospital or an equivalent modality. Polysomnography involves the simultaneous recording of electroencephalogram (brain activity), electrooculogram (eye activity), and electromyogram (muscular activity) signals during one night of sleep. This procedure is non-invasive and does not pose any specific risk to the participant. Additionally, a novel at-home sleep assessment will be applied during at least two consecutive nights in a subset of participants. The chosen participant for the at-home sleep assessment will be well instructed by the professional team at the Parkinson’s Research Clinic.

Only people with confirmed RBD continue in the study for deep phenotyping, genetic stratification and annual follow-up. They are assessed by a team of neurologists, neuropsychologists and research nurses annually (once a year with additional optional visits in-between).

All the participants have to:

  • Undergo an examination by a neurologist
  • Perform neuropsychological tests
  • Give a blood sample
  • Give a urine sample
  • Give a saliva sample

Participants might also be asked to allow access to their medical record and neuroimaging information.

Depending on their health condition and the clinical context, participants may also be asked to contribute the following materials (this part is optional):

  • Hair sample
  • Skin biopsy
  • Stool
  • Cerebrospinal fluid via lumbar puncture
  • Additional colorectal tissue biopsy

Additionally, participants will have a possibility to wear sensors such as GaitLab (previously eGait) shoes and collect sensor-based data.

All efforts will be made to perform all tests and collect data and samples for each study visit within as short a timeframe as possible.

There are no significant risks associated with the assessments and collection of biospecimens described above.