Accelerated Cure Project Repository
The objectives of the Accelerated Cure Project Repository are to:
- Provide samples and data to investigators worldwide who are studying the causes, mechanisms, and other aspects of demyelinating disease. - Accelerate research by allowing scientists to launch studies quickly without a time-consuming sample-collection step. - Create an open-access, multidisciplinary database of experimental results from Repository-based studies that can reveal new insights about multiple sclerosis and other demyelinating diseases.Overview
- Acronym
- ACP
- Website
- ACP
- Investigators
-
- Contacts
-
General Design
- Study design
- Registry
- Start - End Year
- 2004 - 2013
- General Information on Follow Up (profile, frequency)
-
Participants primarily contributed data and biosamples at an initial visit. Only a few participants had follow-up data and biosample collection visits. Most notably, people with neuromyelitis optica had follow-up visits. Participants are followed-up at visits approximately every 1-2 years (this visit may be scheduled at the same time as appointments with the physician).
- Recruitment Target
-
- Individuals
- Number of Participants
- 3,220
- Number of Participants with Biological Samples
- 3,220
- Supplementary Information
-
The data generated from use of the biospecimens are required to be submitted back to Accelerated Cure Project for incorporation into the database.
Access
Availability of data and biosamples
| Possible Access to Data | |
| Possible Access to Biosamples | |
| Other |
Timeline
Populations
ACP - Multiple Sclerosis and Other Demyelinating Disease
The population is composed of individuals who have suffered at least one multiple sclerosis demyelinating event and individuals with at least one central nervous system demyelinating event lasting at least 24 hours and not acute in onset.
Selection Criteria
- Countries
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- United States of America
- Health Status
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- Inclusion: Individuals diagnosed with multiple sclerosis, transverse myelitis, acute disseminated encephalomyelitis, neuromyelitis optica, optic neuritis, and clinically-isolated syndrome having had at least one demyelinating event lasting at least 24 hours and not acute in onset.
Exlusion:Individuals with clinical or radiological evidence of stroke, meningitis, neoplastic, peripheral nervous system or primary muscle disease or other well characterized and defined diseases of the nervous system (exception of MS, TM, ADEM, NMO, ON or CIS), individuals with a history of blood borne pathogens (eg.Hepatitis, HIV/AIDS) or with a history of bone marrow transplant.
- Inclusion: Individuals diagnosed with multiple sclerosis, transverse myelitis, acute disseminated encephalomyelitis, neuromyelitis optica, optic neuritis, and clinically-isolated syndrome having had at least one demyelinating event lasting at least 24 hours and not acute in onset.
- Other Criteria
- Individuals must be willing and able to provide up to 110 ml blood via venipuncture.
- Supplementary Information about selection criteria
-
Individuals at least 18 years old and able to give informed consent or individuals younger than 18 years old, with parental permission, and able to give assent.
Sources of Recruitment
- Specific Population
-
- Clinic patients
- Other specific population : Relatives of participants with a multiple sclerosis demyelinating event.
- Supplementary Information
-
Advertisements may be used to recruit subjects. Participants are initially enrolled at 5 or more study centers in the United States.
Sample Size
- Number of Participants
- 2,481
- Number of Participants with Biological Samples
- 2,481
- Supplementary information about number of participants
-
RRMS: 1436 participants
SPMS: 234 participants
PPMS: 117 participants
CIS: 88 participants
TM: 175 participants
NMO: 383 participants
ON: 16 participants
ADEM: 32 participants
Data Collection Events
| # | Name | Data sources | Data sources - Biosamples | Start | End |
|---|---|---|---|---|---|
| 0 | ACP - Multiple Sclerosis and Other Demyelinating Disease - Enrollment |
|
|
2004 | 2013 |
| 1 | ACP - Multiple Sclerosis and Other Demyelinating Disease - Follow-up 1 |
|
|
2005 | 2013 |
ACP - Control
The population is composed of related or unrelated individuals without any central nervous system demyelinating events and who have not been diagnosed with any demyelinating disease.
Selection Criteria
- Countries
-
- United States of America
- Health Status
-
- Inclusion: Individuals without any demyelinating disease.
Exclusion: Individuals with clinical or radiological evidence of stroke, meningitis, neoplastic, peripheral nervous system or primary muscle disease or other well characterized and defined diseases of the nervous system, Individuals with a history of bloodborne pathogens (e.g., Hepatitis, HIV/AIDS), individuals with a history of allogenic bone marrow transplant.
- Inclusion: Individuals without any demyelinating disease.
- Other Criteria
- Individuals must be willing and able to provide up to 110 ml blood via venipuncture.
- Supplementary Information about selection criteria
-
Individuals at least 18 years old and able to give informed consent or individuals younger than 18 years old, with parental permission, and able to give assent.
Sources of Recruitment
- General Population
-
- Volunteer enrolment
- Other Sources
- Individuals or relatives of participants without a demyelinating event.
- Supplementary Information
-
Participants will initially be enrolled at 5 or more study centers in the United States. Advertisements may be used to recruit subjects.
Sample Size
- Number of Participants
- 739
- Number of Participants with Biological Samples
- 739
Data Collection Events
| # | Name | Data sources | Data sources - Biosamples | Start | End |
|---|---|---|---|---|---|
| 0 | ACPR - Control - Enrollment |
|
|
2004 | 2013 |
| 1 | ACPR - Control - Follow-up 1 |
|
|
2005 | 2013 |
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: 2023-08-10T18:19:21.934