Emory ALS Center
Atlanta, Georgia, United States
Location status: Recruitment status requires confirmation
Contact: Not stated in the official study record.
Research / Study
PiCALS: Pathogenesis in C9orf72-Related ALS
Institutional study · Recruitment status requires confirmation
Official study sources
Institutional study
Pathogenesis in C9orf72-related ALS (PiCALS) flyer ↗Emory ALS Center Clinical Research ↗Emory ALS Center Research ↗
Last verified: 09-30-2026 · Emory ALS Center
Overview
- Official title
- Pathogenesis in C9orf72-Related ALS (PiCALS)
- Brief title
- PiCALS: Pathogenesis in C9orf72-Related ALS
- Registration type
- Institutional study
- NCT number
- Not stated
- Status
- Recruitment status requires confirmation
- Study category
- Genetic, Presymptomatic, Biomarker, Natural history, Prevention
- Sponsor / center
- Emory University
- Research center
- Emory ALS Center
- Collaborators
- Not stated in the official study record.
- Study type
- Observational study
- Phase
- Not applicable / observational
- Enrollment
- Not stated in the official study record.
- Start date
- Not stated in the official study record.
- Primary completion date
- Not stated in the official study record.
- Estimated / actual completion date
- Not stated in the official study record.
- Last source update
- Not stated in the official study record.
What is being studied?
Adults age 18 or older may be eligible if they have a blood relative diagnosed with C9 ALS or are known C9orf72 carriers without ALS symptoms. Procedures described by Emory include genetic counseling, C9orf72 testing, neurological and physical examinations, blood collection, lumbar puncture, and recurring clinic visits.
Intervention(s)
Not stated in the official study record.
Who may be eligible?
This is a simplified summary. The official study team or research center determines eligibility.
- Population / disease status
- Presymptomatic gene carrier, At-risk family member, Blood relative
- Diagnosis / conditions
- C9orf72-related ALS risk
- Age
- 18 Years to Not stated in the official study record.
- Disease duration
- Not stated in the official study record.
- Respiratory criteria
- Not stated in the official study record.
- ALSFRS-R criteria
- Not stated in the official study record.
- Genetic criteria
- The official eligibility criteria include language relevant to this topic; review the full criteria below.
- Medication requirements
- Not stated in the official study record.
Official center study description
Adults age 18 or older may be eligible if they have a blood relative diagnosed with C9 ALS or are known C9orf72 carriers without ALS symptoms. Procedures described by Emory include genetic counseling, C9orf72 testing, neurological and physical examinations, blood collection, lumbar puncture, and recurring clinic visits.
Genetics
- Gene-specific study?
- Yes
- Gene or variant
- C9orf72
- Genetic test required?
- Yes
- Known carrier required?
- Not stated
- Confirmed pathogenic variant required?
- Not stated
- Presymptomatic carriers eligible?
- Yes
- At-risk relative eligible?
- Yes
- Genetic test provided?
- Yes
- Genetic counseling provided?
- Yes
- Results returned / offered?
- Yes
- Family history required?
- Yes
Study design
- Randomized?
- Not stated in the official study record.
- Allocation
- Not stated in the official study record.
- Intervention model
- Not stated in the official study record.
- Masking
- Not stated in the official study record.
- Placebo
- Not stated in the official study record.
- Primary purpose
- Not stated in the official study record.
Endpoints
Primary outcome measures
Not stated in the official study record.
Secondary outcome measures
Not stated in the official study record.
A biomarker outcome should not automatically be interpreted as a clinical outcome.
Locations
Contact
Central contact: Not stated in the official study record.