New York State Multiple Sclerosis Consortium
The New York State Multiple Sclerosis Consortium (NYSMSC) is a regional affinity group of 19 multiple sclerosis centers throughout New York State established to promote multiple sclerosis research and enhance patient care.
The objectives of the registry are to:
Overview
- Acronym
- NYSMSC
- Investigators
-
- Contacts
-
General Design
- Study design
- Registry
- Start - End Year
- 1996 -
- General Information on Follow Up (profile, frequency)
-
Data collection occurs annually.
- Recruitment Target
-
- Individuals
- Number of Participants
- 10,100
Access
Availability of data and biosamples
| Possible Access to Data | |
| Possible Access to Biosamples | |
| Other |
Marker Paper
Jacobs LD , Wende KE, Brownscheidle CM et al. A profile of multiple sclerosis: The New York State Multiple Sclerosis Consortium. Multiple Sclerosis, 1999; 5: 369- 376.
PUBMED 10516782Timeline
Population
NYSMSC population
The population is composed of patients diagnosed with Multiple Sclerosis from the 19 Multiple Sclerosis (MS) Centers in New York State.
Selection Criteria
- Countries
-
- United States of America
- Territory
- New York State
- Health Status
-
- Participants must be diagnosed with Multiple Sclerosis.
Sources of Recruitment
- Specific Population
-
- Clinic patients
- Supplementary Information
-
All participants were recruited at patient visits at one of the 19 New York State Multiple Sclerosis Centers.
Sample Size
- Number of Participants
- 10,100
Data Collection Events
| # | Name | Data sources | Data sources - Biosamples | Start | End |
|---|---|---|---|---|---|
| 0 | NYSMSC - Enrollment |
|
1996 (April) | Ongoing | |
| 1 | NYSMSC - Follow-up 1 |
|
1997 (April) | 1998 (May) | |
| 2 | NYSMSC - Follow-up 2 |
|
1998 (April) | 1999 (May) | |
| 3 | NYSMSC - Follow-up 3 |
|
1999 (April) | 2000 (May) | |
| 4 | NYSMSC - Follow-up 4 |
|
2000 (April) | 2001 (May) | |
| 5 | NYSMSC - Follow-up 5 |
|
2001 (April) | 2002 (May) | |
| 6 | NYSMSC - Follow-up 6 |
|
2002 (April) | 2003 (May) | |
| 7 | NYSMSC - Follow-up 7 |
|
2003 (April) | 2004 (May) | |
| 8 | NYSMSC - Follow-up 8 |
|
2004 (April) | 2005 (May) | |
| 9 | NYSMSC - Follow-up 9 |
|
2005 (April) | 2006 (May) | |
| 10 | NYSMSC - Follow-up 10 |
|
2006 (April) | 2007 (May) | |
| 11 | NYSMSC - Follow-up 11 |
|
2007 (April) | 2008 (May) | |
| 12 | NYSMSC - Follow-up 12 |
|
2008 (April) | 2009 (May) | |
| 13 | NYSMSC - Follow-up 13 |
|
2009 (April) | 2010 (May) | |
| 14 | NYSMSC - Follow-up 14 |
|
2010 (April) | 2011 (May) | |
| 15 | NYSMSC - Follow-up 15 |
|
2011 (April) | 2012 (May) | |
| 16 | NYSMSC - Follow-up 16 |
|
2012 (April) | 2013 (May) | |
| 17 | NYSMSC - Follow-up 17 |
|
2013 (April) | 2014 (May) | |
| 18 | NYSMSC - Follow-up 18 |
|
2014 (April) | 2015 (May) | |
| 19 | NYSMSC - Follow-up 19 |
|
2015 (April) | 2016 (May) | |
| 20 | NYSMSC - Follow-up 20 |
|
2016 (April) | 2017 (May) | |
| 21 | NYSMSC - Follow-up 21 |
|
2017 (April) | 2018 (May) | |
| 22 | NYSMSC - Follow-up 22 |
|
2018 (April) | 2019 (May) | |
| 23 | NYSMSC - Follow-up 23 |
|
2019 (April) | Ongoing |
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: 2023-08-10T18:18:26.617