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Amyotrophic Lateral Sclerosis Clinical Assessment, Research and Education

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... Enrollment (%) 1y FU (%) Hospital admission 10 7 ED visit(s) 8 5 Traumatic injury 8 4 Frozen shoulder 6 5 Contracture(s) 6 5 Aspiration 5 5 ... – PowerPoint PPT presentation

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Title: Amyotrophic Lateral Sclerosis Clinical Assessment, Research and Education


1
Amyotrophic Lateral SclerosisClinical
Assessment, Research and EducationThe ALS
Patient Care Databasewww.alscare.org
2
ALS C.A.R.E. Program
  • ALS Patient Care Database

Improved outcomes
Educational programs
Outcomes
Education
3
Overview
  • Voluntary, confidential, outcomes database
  • Mechanism for evaluating the impact of diagnostic
    and therapeutic decisions
  • Foundation for assessing current patterns
    of clinical practice
  • Effort to improve outcomes for patients with ALS
    and their caregivers

4
Objectives
  • Develop benchmarks
  • Provide individual and aggregate data to
    neurologists
  • Publish overall findings on issues such as
    compliance with AAN practice parameters
  • Improve outcomes

5
Design Principles
  • Observational cohort study
  • Physician-, patient-, and caregiver-reported data
  • Standard data collection instruments
  • Broad participation
  • Uniform diagnostic and assessment measures
  • Data collected at each routine patient visit
  • Quarterly reports delivered to participating
    neurologists

6
ALS C.A.R.E. ProgramMedical Advisory Board
  • Robert G. Miller
  • Fred Anderson
  • Linda Boynton de Sepulveda
  • Mark B. Bromberg
  • Benjamin Rix Brooks
  • Michael Graves
  • Yadalloh Harati
  • Terry Heiman-Patterson
  • Sharon Matland
  • Hiroshi Mitsumoto
  • Dan H. Moore
  • Eric Pioro
  • Steven P. Ringel
  • Jeffrey Rosenfeld
  • Mark A. Ross
  • Robert L. Sufit
  • Ashok Verma

November 2007
7
Study Coordinating Center
  • Center for Outcomes Research - University of
    Massachusetts Medical School
  • Prepare quarterly reports
  • Provide scientific support for data analysis
  • Assure confidentiality

8
Physician Confidentiality
  • Use of coded physician and clinic
  • ID numbers
  • Physician names kept in locked file
  • Provisions approved by UMass Medical Schools
    IRB
  • Expedited local IRB approval (typical)

9
Patient and Caregiver Confidentiality
  • Sites allocate patient ID numbers
  • Provisions approved by UMass Medical Schools
    IRB
  • Verbal informed patient consent per local IRB
    (typical)

10
Data Collection Instruments
  • Health Professional Form
  • Patient Form
  • Caregiver Form
  • Completion Form

11
Physician-Reported Data
  • Type of ALS
  • El Escorial diagnostic criteria
  • Atypical features
  • Regions affected
  • ALS functional rating score
  • Forced vital capacity
  • ALS-related conditions
  • Current management

12
Patient Self-Reported Data
  • Demographics (age, sex, etc)
  • Personal information (insurance, income,
    employment status, etc)
  • General health status (capacity to perform ADL,
    psychosocial status, etc)
  • Diagnostic factors (presenting symptoms)
  • Activities of daily living
  • Use of services (number of physician visits,
    satisfaction with medical care, etc)

13
Caregiver-Reported Data
  • Relationship to patient
  • Source of payment (if paid caregiver)
  • General health status of caregiver
  • Psychosocial impact on caregiver
  • Employment status of caregiver

14
Quarterly Reports
  • Confidential
  • Include individual physician/site and aggregate
    North American data
  • Allow participants to compare their outcomes with
    North American benchmarks

15
History of ALS C.A.R.E. Program
  • First board meeting November 1995
  • Pilot trial December 1995
  • Modify data forms January 1996
  • Begin data collection September 1996
  • First report February 1997
  • gt5,000 patients February 2003
  • New report design February 2003
  • New report design February 2003
  • Electronic data capture September 2004
  • gt6,000 patients November 2005
  • Data collection completed June 2007

November 2007
16
Enrollment Summary
  • Clinics enrolled 323
  • Clinics submitting data 109
  • Neurologists enrolled 381
  • Patients enrolled 6337

November 2007
17
Distribution of Enrolled Sites
November 2007
18
Follow-Up Data
November 2007
19
DemographicsAt Study Enrollment
  • Age, years
  • Median 60
  • Range 20-90
  • Caucasian 92
  • Female 41

November 2007
20
Type of ALS At Study Enrollment
November 2007
21
Limitations
  • Observational, no control group
  • Mainly academic practices
  • No data on pathological confirmation
  • More longitudinal data needed

22
Conclusions
  • A North American database has been established
    for studying ALS
  • The database is informative about practice
    patterns (diagnostic tests, treatment, etc.)
  • Patient satisfaction and patient needs are
    reflected in the database
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