Within this there are a number of rare disease research groups, including
- sporadic and familial forms of amyotrophic lateral sclerosis (ALS),
- frontotemporal dementia (FTD),
- primary lateral sclerosis (PLS),
- hereditary spastic paraplegia (HSP), and
- progressive muscular atrophy (PMA).
The goals of the CReATe consortium are to advance therapeutic development for this group of neurodegenerative disorders through study of the relationship between clinical phenotype and underlying genotype, and also through the discovery and development of biomarkers. https://www.rarediseasesnetwork.org/cms/create
One of their current projects is to develop A Patient Centric Motor Neuron Disease Activities of Daily Living Scale for all of their diseases.
The text below is from their website, describing the study. If you have HSP (or one of the other diseases) you can take part. You answer a monthly questionnaire by email for a year, taking 10-20 mins each time. If you want to take part, sign up! I've done this.
About This StudyTargeted EnrollmentBe an individual with one of the following:
You cannot provide informed consent and complete survey
How to participate:
The research questions are: