iConquerMS People-Powered Research Network
- Start Year
- 2014
- Supplementary Information
- https://www.pcori.org/research-results/2015/iconquerms-participant-powered-research-network
Visit iConquerMS
| Investigators | Contacts |
|---|---|
|
|
Design
- Study design
- Registry
- Follow Up
- Participants were seen at baseline and are followed up every six months.
Recruitment
- Recruitment Target
-
- Individuals
Number of Participants
- Number of Participants
- 5,500
- Number of Participants with Biological Samples
- Supplementary Information
- The iConquerMS People-Powered Research Network Registry aims to create an active community of 20,000 participants.
Access
Availability of data and biosamples
| Possible Access to Data | |
| Possible Access to Biosamples | |
| Other |
Timeline
iConquerMS population
Selection Criteria
- Minimum age
-
21
- Newborns
- Twins
- Countries
-
- United States of America
- Territory
- Massachusetts
- Ethnic Origin
-
- Health Status
-
- Diagnosed with multiple sclerosis (MS)
Recruitment
- Sources of recruitment
-
- General population
- General Population
-
- Volunteer enrolment
- Supplementary Information
-
The Engagement Committee is responsible for the recruitment, engagement, and retention of people affected by Multiple Sclerosis (MS). Recruitment strategy initially relied on the “trusted voice” of leading Multiple Sclerosis (MS) patient bloggers to help promote enrollment in the network. Participants register in the network through its online portal .
Number of Participants
- Number of Participants
- 4,920
- Number of Participants with Biological Samples
Data Collection Events
| # | Name | Description | Start | End |
|---|---|---|---|---|
| 0 |
iConquerMS - Baseline
|
Information is collected from participants through surveys which collected information about demographics, Multiple Sclerosis (MS) history, overall health, quality of life, comorbidities, ... |
2014-11 | |
| 1 |
iConquerMS - Follow-up 1
|
Information is collected from participants through surveys which collected information about demographics, Multiple Sclerosis (MS) history, overall health, quality of life, comorbidities, ... |
2016-08 | 2017-02 |
| 2 |
iConquerMS - Follow-up 2
|
Information is collected from participants through surveys which collected information about demographics, Multiple Sclerosis (MS) history, overall health, quality of life, comorbidities, ... |
2017-03 | 2017-06 |
| 3 |
iConquerMS - Follow-up 3
|
Information is collected from participants through surveys which collected information about demographics, Multiple Sclerosis (MS) history, overall health, quality of life, comorbidities, ... |
2017-08 | 2017-10 |
| 4 |
iConquerMS - Follow-up 4
|
Information is collected from participants through surveys which collected information about demographics, Multiple Sclerosis (MS) history, overall health, quality of life, comorbidities, ... |
2018-03 | 2018-06 |
| 5 |
iConquerMS - Follow-up 5
|
Information is collected from participants through surveys which collected information about demographics, Multiple Sclerosis (MS) history, overall health, quality of life, comorbidities, ... |
2018-09 | 2018-12 |
| 6 |
iConquerMS - Follow-up 6
|
Information is collected from participants through surveys which collected information about demographics, Multiple Sclerosis (MS) history, overall health, quality of life, comorbidities, ... |
2019-03 | 2019-08 |
| 7 |
iConquerMS - Follow-up 7
|
Information is collected from participants through surveys which collected information about demographics, Multiple Sclerosis (MS) history, overall health, quality of life, comorbidities, ... |
2019-09 | 2019-11 |
| 8 |
iConquerMS - Follow-up 8
|
Information is collected from participants through surveys which collected information about demographics, Multiple Sclerosis (MS) history, overall health, quality of life, comorbidities, ... |
2020-03 |
Classifications
- Socio-demographic and economic characteristics
- Lifestyle and behaviours
- Birth, pregnancy and reproductive health history
- Perception of health, quality of life, development and functional limitations
- Diseases
- Symptoms and signs
- Medication and supplements
- Non-pharmacological interventions
- Health and community care services utilization
- Death
- Physical measures and assessments
- Laboratory measures
- Cognition, personality and psychological measures and assessments
- Life events, life plans, beliefs and values
- Preschool, school and work life
- Social environment and relationships
- Physical environment
- Administrative information
- Perception of health
- Quality of life
- Life course development
- Functional limitations
- Other perception of health, quality of life and functional limitation-related information
Socio-demographic and economic characteristics
Lifestyle and behaviours
Perception of health, quality of life, development and functional limitations
Diseases
Symptoms and signs
Medication and supplements
Non-pharmacological interventions
Health and community care services utilization
Physical measures and assessments
Administrative information
Quality of life
Functional limitations