patient powered self report registry als

What is the National ALS Registry and how does it work?

The National ALS Registry is a program to collect and analyze data about persons living with ALS. It includes data from existing national databases and information provided by persons with ALS who choose to take part. Researchers can use Registry data to look for disease pattern changes over time.

What is the National amyotrophic lateral sclerosis registry?

The National Amyotrophic Lateral Sclerosis (ALS) Registry allows persons with ALS to fight back and help defeat ALS (Lou Gehrig’s Disease). By signing up, being counted, and answering brief questions about you and your disease, you can help researchers find answers to important questions.

What is ALS (Lou Gehrig's disease)?

Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig’s disease, is a progressive disease that attacks the nerve cells that control voluntary movement. The National ALS Registry is a congressionally mandated registry for persons in the U.S. with ALS.

What is amyotrophic lateral sclerosis (ALS)?

Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig’s disease, is a progressive disease that attacks the nerve cells that control voluntary movement.

What is the ALS Registry?

The National ALS Registry is a program to collect and analyze data about persons living with ALS. It includes data from existing national databases and information provided by persons with ALS who choose to take part. Researchers can use Registry data to look for disease pattern changes over time.

Is ALS a reportable disease?

ALS is not a nationally notifiable condition in the United States (i.e., it is not a reportable condition in all jurisdictions), and individual state reporting requirements differ, with Massachusetts being the only state that mandates reporting.

Is there a marker for ALS?

No single biochemical abnormality is specific to the diagnosis of ALS. Some have been evaluated as specific and sensitive markers of the disease, although none has proven to be robust. These have included CSF studies, such as measures of protein content, amino acids, and glutamate.

How do you confirm an ALS diagnosis?

These typically include an MRI (magnetic resonance imaging) of the neck, and sometimes of the head and lower spine, an EMG (electromyography) which tests nerve conduction, and a series of blood tests. Sometimes urine tests, genetic tests, or a lumbar puncture (also called a spinal tap) are also necessary.

What is the death rate for ALS?

The total ALS deaths identified were 24,328, resulting in an overall age-adjusted mortality rate of 1.70 (95% CI 1.68-1.72). Previous reports of ALS mortality in the US showed similar age, sex, and race distributions but with greater age-adjusted mortality rates due to the inclusion of disease into the case definition.

Do you have ALS your whole life?

Most people live for at least 3 years after their diagnosis. Some people live up to 10 years. As new medicines and treatments for symptoms become available, people will live longer and longer with the disease. Your health care team can help you understand what to expect.

Does ALS show inflammation in blood work?

Inflammation occurs in the CNS during ALS, and is also detected peripherally in blood as altered immune cell population abundance and released factors [18,19,20].

What's the color for ALS?

Red is the official color of The ALS Association, and thanks to a new feature on Facebook, you can use this attention-grabbing color to bring awareness to the cause. Post red status updates about ALS Awareness Month and let your friends know that they can play a role in finding a cure!

Can ALS patients donate blood?

Specifically, patients suffering from dominantly inherited forms of ALS in which mutated proteins are produced should not initially be considered as organ donors in nonacute cases.

How can I test myself for ALS?

There is no way to test for ALS at home. However, knowing the symptoms can help you recognize when you should to talk to a healthcare provider. Understanding the signs of ALS and knowing how they affect your body can help you communicate any changes you notice in your body's function.

How often is ALS misdiagnosed?

ALS is frustratingly difficult to diagnose. Consider these ALS misdiagnosis statistics: In about 10% to 15% of the cases, patients initially diagnosed with ALS actually have another disease or condition instead (false positive). Nearly 40% of people with ALS initially receive a false negative.

Where do ALS muscle twitches start?

To diagnosis ALS, a physician needs to see signs of progressive muscle weakness. What causes fasciculations? They originate at the very tips of the nerves, called axons, as they come close to being in contact with the muscle.

Do neurologists report ALS?

Every year, neurologists, hospitals, and neurology clinics must report cases of Amyotrophic Lateral Sclerosis (ALS) to the Department of Public Health. Patients cannot "self-report," and should instead encourage their health care professionals to report.

Does DPH require a report?

DPH requires the reporting of cases on an annual basis. All neurologists, hospitals, neurology clinics, and ALS multidisciplinary centers throughout the state are contacted at the beginning of each calendar year to report cases seen in the previous calendar year, providing the patient’s name, date of birth, and medical record number. If you received a letter of request and report form by mail, please return the report form as soon as possible.

SEC. 2. AMENDMENT TO THE PUBLIC HEALTH SERVICE ACT

Part P of title III of the Public Health Service Act (42 U.S.C. 280g et seq.) is amended by adding at the end the following:

SEC. 3. REPORT ON REGISTRIES

Not later than 18 months after the date of enactment of this Act, the Secretary of Health and Human Services may submit to the appropriate committees of Congress a report outlining

What is the purpose of the ALS study?

This research study is the first to evaluate whether cell particles released from the central nervous system can potentially serve as novel biomarkers of environmental exposures and disease progression in ALS . Investigators will test biospecimens from ALS patients for metals and pesticides while matching exposure and patient-specific RNA to ALS signaling pathways.

What are researchers trying to isolate?

Researchers are trying to isolate any genetic predispositions to ALS or periods of life when someone is more susceptible to ALS. They are also using patient residential histories to estimate if and when patients could have been exposed to toxic bacteria, pesticides, pollution, or other environmental stressors.

Can chronic conditions make you more susceptible to ALS?

Little is known about how chronic medical conditions and drugs may make people more susceptible to ALS. Investigators studied the role of autoimmune diseases, as well as the drugs used to treat those disorders, as both risk and prognostic factors for ALS.

About The Registry

See more on cdc.gov

What Are The Goals of The Registry?

Why Should I Join The Registry?