Sonya Slifka Longitudinal Multiple Sclerosis Study
The objectives of this study were to collect data that would allow investigators to examine cross-sectionally and longitudinally the demographic and clinical , and healthcare characteristics of a generally representative sample of individuals with multiple sclerosis (MS). Data can be used to examine utilization and cost of health services, treatment (disease modifying therapies, prescription and over-the-counter medications, rehabilitation and mental health and complementary and alternative therapies), quality of life, healthcare provider and family caregiver characteristics, and neurologic, medical (comorbid conditions), and economic and psychosocial outcomes.
Overview
- Acronym
- SLIFKA
- Investigators
-
- Contacts
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General Design
- Study design
- Cohort
- Start - End Year
- 2000 - 2010
- General Information on Follow Up (profile, frequency)
-
Baseline data were collected by computer-assisted telephone interviews (CATI) with follow-ups every 6 months through 2007 then follow-up annually through 2010. Data on selected topics were updated in 2019/20.
- Recruitment Target
-
- Individuals
- Number of Participants
- 5,136
Access
Availability of data and biosamples
| Possible Access to Data | |
| Possible Access to Biosamples | |
| Other |
|
Marker Paper
Minden SL, Frankel, D, Hadden L, et al. The Sonya Slifka Longitudinal Multiple Sclerosis Study: methods and sample characteristics. Multiple Sclerosis Journal, 2006; 12(1), 24–38.
PUBMED 16459717Timeline
Populations
SLIFKA - Cohort 1
The population is composed of people with all durations and courses of illness, all degrees of severity, all types of disabilities, from all regions of the United States and from both urban and rural settings (a substantial subgroup of recently-diagnosed people (within the past 12 months)), who receive their multiple sclerosis (MS) care in primary, tertiary, and MS specialty care settings and people who receive no MS care at all.
Selection Criteria
- Minimum age
-
18
- Countries
-
- United States of America
Sources of Recruitment
- General Population
-
- Selected sample
- Supplementary Information
-
Cohort 1 was recruited in 2000. Paricipants were randomly selected from the National Multipile Sclerosis Society (NMSS) mailing lists (primarily established MS) with systematic nationwide outreach for recently-diagnosed individuals. Subsamples were stratified by region and urban/rural location and recruited in replicates through mailings and follow-up phone calls.
Sample Size
- Number of Participants
- 2,156
Data Collection Events
| # | Name | Data sources | Data sources - Biosamples | Start | End |
|---|---|---|---|---|---|
| 0 | SLIFKA - Cohort 1 - Baseline |
|
2000 (January) | 2000 (December) | |
| 1 | SLIFKA - Cohort 1 - Log 1 |
|
2000 (June) | 2001 (June) | |
| 2 | SLIFKA - Cohort 1 - Follow-up 1 |
|
2001 (January) | 2001 (December) | |
| 3 | SLIFKA - Cohort 1 - Log 2 |
|
2001 (June) | 2002 (June) | |
| 4 | SLIFKA - Cohort 1 - Follow-up 2 |
|
2002 (January) | 2002 (December) | |
| 5 | SLIFKA - Cohort 1 - Log 3 |
|
2002 (June) | 2003 (June) | |
| 6 | SLIFKA - Cohort 1 - Follow-up 3 |
|
2003 (January) | 2003 (December) | |
| 7 | SLIFKA - Cohort 1 - Log 4 |
|
2003 (June) | 2004 (June) | |
| 8 | SLIFKA - Cohort 1 - Follow-up 4 |
|
2004 (January) | 2004 (December) | |
| 9 | SLIFKA - Cohort 1 - Log 5 |
|
2004 (June) | 2005 (June) | |
| 10 | SLIFKA - Cohort 1 - Follow-up 5 |
|
2005 (January) | 2005 (December) | |
| 11 | SLIFKA - Cohort 1 - Log 6 |
|
2005 (June) | 2006 (June) | |
| 12 | SLIFKA - Cohort 1 - Follow-up 6 |
|
2006 (January) | 2006 (December) | |
| 13 | SLIFKA - Cohort 1 - Log 7 |
|
2006 (June) | 2007 (June) | |
| 14 | SLIFKA - Cohort 1 - Follow-up 7 |
|
2007 (January) | 2007 (December) | |
| 15 | SLIFKA - Cohort 1 - Log 8 |
|
2007 (June) | 2008 (June) | |
| 16 | SLIFKA - Cohort 1 - Follow-up 8 |
|
2008 (January) | 2008 (December) | |
| 17 | SLIFKA - Cohort 1 - Log 9 |
|
2008 (June) | 2009 (June) | |
| 18 | SLIFKA - Cohort 1 - Follow-up 9 |
|
2009 (January) | 2009 (December) | |
| 19 | SLIFKA - Cohort 1 - Follow-up 10 |
|
2019 (January) | 2019 (December) |
SLIFKA - Cohort 2
The population is composed of people with all durations and courses of illness, all degrees of severity, all types of disabilities, from all regions of the United States and from both urban and rural settings who receive their multiple sclerosis (MS) care in primary, tertiary, and MS specialty care settings and people who receive no MS care at all.
Selection Criteria
- Minimum age
-
18
- Countries
-
- United States of America
Sources of Recruitment
- General Population
-
- Selected sample
- Supplementary Information
-
Cohort 2 was recruited in 2007/2008.Paricipants were randomly selected from the National Multipile Sclerosis Society (NMSS) mailing lists (primarily established MS) with systematic nationwide outreach for recently-diagnosed individuals. Subsamples were stratified by region and urban/rural location and recruited in replicates through mailings and follow-up phone calls. Individuals who were 18-24 years, African-American, or Hispanic oversampled.
Sample Size
- Number of Participants
- 2,478
Data Collection Events
| # | Name | Data sources | Data sources - Biosamples | Start | End |
|---|---|---|---|---|---|
| 0 | SLIFKA - Cohort 2 - Baseline |
|
2008 (January) | 2008 (December) | |
| 1 | SLIFKA - Cohort 2 - Log 1 |
|
2008 (June) | 2009 (June) | |
| 2 | SLIFKA - Cohort 2 - Follow-up 1 |
|
2009 (January) | 2009 (December) | |
| 3 | SLIFKA - Cohort 2 - Follow-up 2 |
|
2019 (January) | 2019 (December) |
SLIFKA - Cohort 3
The population is composed of people with all durations and courses of illness, all degrees of severity, all types of disabilities, from all regions of the United States and from both urban and rural settings who receive their multiple sclerosis (MS) care in primary, tertiary, and MS specialty care settings and people who receive no MS care at all
Selection Criteria
- Minimum age
-
18
- Countries
-
- United States of America
Sources of Recruitment
- Specific Population
-
- Other specific population : Person with established or recently diagnosed MS selected from NMSS mailing list
- Supplementary Information
-
Participants were recruited through mailings and follow-up phone calls from both cohorts with systematic nationwide outreach for recently-diagnosed individuals (within the past 24 months) through the NMSS website and emails to recently-diagnosed members.
Sample Size
- Number of Participants
- 502
Data Collection Events
| # | Name | Data sources | Data sources - Biosamples | Start | End |
|---|---|---|---|---|---|
| 0 | SLIFKA - Cohort 3 -Baseline |
|
2019 (January) | 2019 (December) |
Participating Studies
| Acronym | Name | Study design | Countries |
|---|
Harmonization Initiatives Included
| Acronym | Name |
|---|
Datasets
| Name | Data Collection Events | Variables |
|---|
Areas of Information Collected
- Socio-demographic and economic characteristics
- Death
- Lifestyle and behaviours
- Physical measures and assessments
- Birth, pregnancy and reproductive health history
- Laboratory measures
- Perception of health, quality of life, development and functional limitations
- Cognition, personality and psychological measures and assessments
- Diseases
- Life events, life plans, beliefs and values
- Symptoms and signs
- Preschool, school and work life
- Medication and supplements
- Social environment and relationships
- Non-pharmacological interventions
- Physical environment
- Health and community care services utilization
- Administrative information
Variables Content Summary
Areas of Information Collected
No Areas of Information Collected
No Scales Collected
Areas of Information Collected per per Population and Data Collection Event
No Areas of Information Collected
No Scales Collected
Networks
| Acronym | Name | Harmonization Initiatives | Individual Studies |
|---|
Last Update: 2023-08-10T18:18:28.599