Train-the-Trainer Presentation

Appendix L - Train-the-trainer Presentation

Form Approved
OMB No. 0923-XXXX
Exp. Date xx/xx/20xx

Promotion of the National
Amyotrophic Lateral Sclerosis
(ALS) Registry
Public reporting burden of this collection of information is estimated to average 60 minutes per response, including the time for reviewing instructions,
searching existing data sources, gathering and maintaining the data needed, and completing and reviewing the collection of in formation. An agency
may not conduct or sponsor, and a person is not required to respond to a collection of information unless it displays a curre ntly valid OMB control
number. Send comments regarding this burden estimate or any other aspect of this collection of information, including suggest ions for reducing this
burden to CDC/ATSDR Information Collection Review Office, 1600 Clifton Road NE, MS D-74, Atlanta, Georgia 30333; ATTN: PRA (0923-XXXX).

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What will be covered today
•
•
•
•

The National ALS Registry (Registry)
Importance of Registry self-enrollment
Why we need your help
Preparing you to talk to your ALS patients about
the Registry
– What you can do
– Self-enrollment demonstration
• Resources for neurologists
• How to reach us
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The National ALS Registry
• ALS is a nonreportable disease.
• Uncertainty of the
incidence,
prevalence, and
etiology of the
disease in the US.

• Public Law No: 110-303
established the Registry.
• The Agency for Toxic
Substances and Disease
Registry (ATSDR)
maintains the Registry.
• It is the only populationbased Registry for the
entire US.
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Registry goals
• The goal of the Registry is to gather information
that can be used to:
– Estimate the number of new cases of ALS each year,
– Estimate the number of people who have ALS at a
specific point in time,
– Better understand who gets ALS and what factors
affect the disease,
– Examine the connection between ALS and other
MNDs that can be confused with ALS, misdiagnosed
as ALS, and in some cases progress to ALS, and
– Improve care for people with ALS.
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Registry data:
A Two-Pronged Approach
• Data from national administrative databases
– Medicare
– Medicaid
– Veterans Health Administration
– Veterans Benefits Administration

• Secure patient self-enrollment web portal
– A US citizen or legal resident
– 18 years of age or older
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Registry enrollment by
source
• From October 19, 2010 through December 31,
2011, a total of 12,187 people with ALS were
identified by the Registry*

* Mehta P, Antao V, Kaye W, et al. Prevalence of amyotrophic lateral sclerosis–United States, 20102011. MMWR 2014;63(No. SS-7):1-13.
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Importance of self-enrollment
• By self-enrolling, people living with ALS can:
– Ensure they are counted in the Registry.
• The algorithm applied to the administrative databases misses about
20% of cases.

– Complete risk factor surveys.
– Sign up to receive notifications for other research
project for which they may be eligible to participate.

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Why we need your help
• Neurologists typically diagnose/treat people with ALS
• Approximately 5,000 new ALS cases are diagnosed
every year.
• Self-enrollment is lower than expected, especially
among non-whites and older individuals.
• Neurologists have an opportunity to educate these
individuals about the Registry.
• Your commitment and participation are needed to make
the Registry a success.

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What can you do?
• We hope you will talk to your ALS patients about
the Registry
• To guide your discussion you may follow the 5A
framework
• Ask, advise, assess, assist, arrange

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What can you do?
• Ask your ALS patient if they have enrolled in the
Registry
If Yes:
• Explain the
importance of
completing the risk
factor surveys

If No:
• Advise to enroll
• Assess if interested in
enrolling
• Assist with enrollment
• Arrange to talk about
enrollment at next
appointment
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Advise to enroll
•
•
•
•

Explain the benefits of enrolling
Answer questions
Provide a brochure
Ask patients to visit the Registry website:
www.cdc.gov/ALS
• Provide the ATSDR Registry phone number (800232-4636)

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Advise to complete the
risk factor surveys
• Ask patients to complete the 17 surveys
– Questions will ask patients about who they are, where
they lived or worked, family history of ALS, hobbies
and other activities in which they take part, and how
they are coping with ALS.

– Average 5 minutes to complete (per survey)
– Range from 1-24 questions
– Do not need to be completed all at once

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Assess if interested in
enrolling
• Answer questions about the Registry
• Ask if patient tried to enroll or will enroll

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Assist with enrollment
• Provide a copy of the step-by-step infographic
• Ask patients to visit the Registry website:
www.cdc.gov/ALS
• Tell them about the six minute tutorial video
• Ask patients if they have a personal email
address
• Offer to help them enroll
• Suggest other support networks
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Arrange to talk about
enrollment at next appointment
• Tell patient you will remind them about the and
surveys
• Tip: Flag medical chart for future discussion

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Self-enrollment steps
1. Log on to www.cdc.gov/ALS
2. Click “JOIN THE REGISTRY”
3. Click “Join ALS Registry” on bottom left in the box “Persons with
ALS (PALS) Account”
4. Account notification screen: Read and click “I agree”
5. Answer screening questions
6. National ALS Registry consent form. Click “I agree”
7. Consent to receive emails for clinical research
8. Complete account registration
9. Create username, password, and security questions
10. Registration complete
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1. Log on to:
www.cdc.gov/als

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2. Click on:
“JOIN THE REGISTRY”

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3. Click “Join ALS Registry” on
bottom left in the box “Persons with ALS
(PALS) Account”

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4. Account notification
screen: Read and click “I
Agree”

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5. Answer screening
questions

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6. National ALS Registry
consent form. Click “I agree”

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7. Consent to receive
emails for clinical research

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8. Complete account
registration

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9. Create Username,
Password, Security Questions

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Surveys

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If your ALS patients have
questions about the
Registry that you cannot
answer tell them to:
– Log-on to the ALS Registry website:

www.cdc.gov/ALS
– Visit the Registry frequently asked questions:

http://wwwn.cdc.gov/als/ALSFAQ.aspx
– Call the number on the ALS Registry materials:

(800) 232-4636
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Resources for
Neurologists
• Website - www.cdc.gov/ALS
– Free CME module
• http://www.atsdr.cdc.gov/emes/ALS/

– Registry materials available to download and order
• https://wwwn.cdc.gov/als/ALSOrderRegistryMaterials.as
px

• Contact us

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The CME module provides
• Free continuing education contact hours (1.5 CME, 1.5
CNE, 1.5 CHES, 0.2 CEU)
• A clinical overview on ALS
• Current clinical practice recommendations for diagnosis,
treatment, and management of patients with ALS,
including communication strategies
• Information on the importance of standard diagnostic
coding procedures for diagnosis of ALS patients in
clinical practice
• Information on the National ALS Registry and the
importance of ALS patient self enrollment in the Registry
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Available Registry materials

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How to contact our team
• Heather Jordan, MPH, CPH, MCHES
609-613-6930
hjordan@mcking.com
• Lindsay Rechtman, MPH, CHES

404-683-4394
lrechtman@mcking.com

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Thank you for your time.

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