Ignite Creation Date:
2024-05-06 @ 12:51 PM
Last Modification Date:
2024-10-26 @ 1:05 PM
Study NCT ID:
NCT03865420
Status:
RECRUITING
Last Update Posted:
2024-05-01
First Post:
2019-02-25
Brief Title:
Amyotrophic Lateral Sclerosis ALS Families Project
Sponsor:
Columbia University
Organization:
Columbia University
Study Overview
Official Title:
Amyotrophic Lateral Sclerosis ALS Families Project
Status:
RECRUITING
Status Verified Date:
2024-04
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
None
Brief Summary:
This program provides family members of individuals with familial ALS the opportunity to contribute to research focused on learning more about why motor neuron degeneration begins and how or why it progresses This study provides genetic counseling and testing to help participants understand and manage their risk and determine if they want to learn their genetic status This study will follow unaffected ALS gene mutation carriers on an annual basis to gather essential information that will ultimately help researchers develop novel therapies for the prevention and treatment of ALS
Detailed Description:
Approximately 10 of people with amyotrophic lateral sclerosis ALS or Lou Gehrigs Disease have a family history of ALS or a related condition called frontotemporal dementia FTD In most of these familial cases and a significant number of sporadic patients with no family history a mutation is present in one of a growing number of genes that have been associated with ALS andor FTD
The ALS Families Project will study unaffected carriers of ALSFTD-associated gene mutations to investigate the first steps in the disease process that leads to motor neuron degeneration with the goal of identifying early disease targets and points of intervention to slow or stop disease onset and progression
Unaffected individuals who have either a family member with a known ALSFTD-associated gene mutation or have a strong family history of ALS and FTD are invited to participate in the ALS Families Project For those who enroll research visits will occur every 6-12 months
The ALS Families Project will study unaffected carriers of ALSFTD-associated gene mutations to investigate the first steps in the disease process that leads to motor neuron degeneration with the goal of identifying early disease targets and points of intervention to slow or stop disease onset and progression
Unaffected individuals who have either a family member with a known ALSFTD-associated gene mutation or have a strong family history of ALS and FTD are invited to participate in the ALS Families Project For those who enroll research visits will occur every 6-12 months
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
False
Is a FDA Regulated Device?:
False
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None