Genetic Counseling for ALS
What You Need to Know Before You Apply
What is the purpose of this trial?
This trial aims to understand why motor neuron problems start and progress in individuals with familial ALS, a condition affecting muscle control. Participants will receive genetic counseling to understand genetic risks and testing to learn about their risk and decide whether to know their genetic status. The goal is to gather information from individuals who carry ALS-related gene changes but do not yet show symptoms, potentially aiding in the development of new treatments. The trial seeks individuals with a family history of ALS who are willing to undergo genetic analysis and can travel regularly to Columbia University Irving Medical Center for the study. As an unphased trial, it offers participants the chance to contribute to groundbreaking research that could lead to future ALS treatments.
Do I need to stop my current medications for the trial?
The trial information does not specify whether you need to stop taking your current medications. It's best to discuss this with the study team for guidance.
What is the safety track record for genetic counseling and genetic testing?
Research has shown that genetic counseling is generally safe and well-received. Studies indicate that tools like educational programs can enhance the effectiveness of genetic counseling, aiding patients in understanding their genetic risks better. No major negative effects have been reported from genetic counseling itself.
Genetic testing involves examining DNA to learn about genetic traits. While the risks are not physical, they can be emotional or social. For instance, discovering a potential genetic risk might cause stress or worry. Physical harm from the test is rare. Genetic testing is not heavily regulated, so understanding the implications is important. Always consider the privacy of genetic information, as it might not be fully secure.
Overall, both genetic counseling and testing have been used for many years and are considered safe. They help people understand their genetic risks without causing physical harm.12345Why are researchers excited about this trial?
Researchers are excited about the ALS Families Project because it focuses on genetic counseling and testing, which are not typical treatments for ALS but offer a new approach to understanding and managing the disease. Unlike traditional ALS treatments, which primarily aim to manage symptoms and improve quality of life, genetic counseling and testing provide personalized insights into the genetic factors that may contribute to the disease. This can help identify individuals at risk and guide more targeted intervention strategies in the future. By focusing on the genetic underpinnings of ALS, this approach has the potential to pave the way for more personalized and effective treatment plans.
What evidence suggests that genetic counseling and testing are effective for understanding and managing ALS risk?
Research has shown that genetic counseling helps people understand complex genetic information, reducing their worries and increasing their knowledge. This is particularly important for those with a family history of ALS, as it helps them understand their own risks. Studies indicate that genetic counseling can also help people feel less at risk of developing genetic conditions.
Genetic testing plays a crucial role in identifying inherited disorders. It can reveal if someone carries genes linked to ALS, aiding in early identification of disease risks. In one study, 1 in 30 people discovered genetic results that enabled them to take steps to manage or prevent disease. Overall, genetic testing and counseling together provide valuable insights into personal health and disease risks.56789Who Is on the Research Team?
Matthew Harms, MD
Principal Investigator
Columbia University
Are You a Good Fit for This Trial?
Inclusion Criteria
Timeline for a Trial Participant
Screening
Participants are screened for eligibility to participate in the trial
Genetic Counseling and Testing
Participants receive genetic counseling and testing to understand and manage their risk and determine if they want to learn their genetic status
Annual Follow-up
Unaffected ALS gene mutation carriers are followed on an annual basis to gather information for research
Long-term Monitoring
Participants are monitored for the emergence of symptoms attributable to gene mutations
What Are the Treatments Tested in This Trial?
Interventions
- Genetic Counseling
- Genetic Testing
Find a Clinic Near You
Who Is Running the Clinical Trial?
Columbia University
Lead Sponsor
Citations
Genetic Counseling and the Central Tenets of Practice - PMC
Genetic counseling aims to communicate cutting-edge genomic science within an empathic understanding of the client/patient's concerns and needs.
Systematic evidence review and meta-analysis of ...
For patient-reported outcomes, pre-test GC significantly decreased worry, increased knowledge, and decreased perceived risk but did not significantly affect ...
Results From a Randomized Study | JCO Oncology Practice
Video Education Is an Acceptable Alternative to Pretest Genetic Counseling for Patients With Breast, Ovarian, Pancreatic, and Metastatic ...
Evaluating genetic counseling session duration: A scoping ...
On average, genetic counseling patient care time was a mean of 60 min (53 min median) for observational studies and control groups in experimental studies.
Uptake of Cancer Genetic Services for Chatbot vs Standard ...
Main Outcomes and Measures Primary outcomes were completion of pretest cancer genetic services (ie, pretest genetics education chat or pretest ...
Use of an educational computer program before genetic ...
This study shows that the interactive computer program “Breast Cancer Risk and Genetic Testing” is a valuable adjunct to genetic counseling.
Counseling About Genetic Testing and Communication of ...
The purpose of this Committee Opinion is to provide an outline of how obstetrician–gynecologists and other health care providers can best incorporate these ...
Digital technologies in genetic counseling
Digital technologies in genetic counseling aim to increase efficiency, patient autonomy, and accessibility, but require careful ethical consideration and are ...
Cancer Genetics Risk Assessment and Counseling (PDQ®)
Cancer genetics risk assessment and genetic counseling includes family history, psychosocial assessments, and education on hereditary cancer ...
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