Multiple SclerosisNCT01075737
An Observational Study to Assess the Quality of Life of the Patients With Multiple Sclerosis and Their Caregivers
An observational study of Multiple Sclerosis, run by Merck KGaA, Darmstadt, Germany at 1 site in Argentina.
Trial summary
This is an observational, non controlled, non-interventional, multicentric, prospective study planned to be conducted in 450 subjects diagnosed with MS and their caregivers in 20 centres of Argentina. Read more about this study
- Who is it for?
- Ages 21 years and older
- Conditions the study is for
- Multiple Sclerosis
- How many people
- 141 participants
- Where
- 1 siteArgentina
- Study dates
- Aug 2008to Mar 2012
- Phase
- Observational
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 21 years and older
- All sexes
- No healthy volunteers
- Adult, Older adult
Study population: Subjects with diagnosed MS and their caregivers in Argentinean population.
Who may be able to join
- MS subjects and their caregivers, >21 years of age of both sexes
- Subjects who have signed informed consent
- Subjects with established MS diagnosis according to the revised Mc Donald criteria - 2005 with at least 1 year of evolution
- Subjects with MS that have an identified caregiver
Who cannot join
- Subjects with other(s) associated neurological, psychiatric or systemic disease(s)
Trial locations and contacts
1 site in 1 country.
Argentina1 site
25 de Mayo 138, Capital, Pcia. de
Santiago del Estero, G4200AWD
About this study
Official title: Observational Study to Assess the Quality of Life of the Caregivers of Patients With Multiple Sclerosis
This is an observational, non controlled, non-interventional, multicentric, prospective study planned to be conducted in 450 subjects diagnosed with MS and their caregivers in 20 centres of Argentina. The observations from this study will contribute to the awareness of the impact on the Quality of Life (QoL) of the caregivers and, eventually will also provide measures for helping the subjects with multiple sclerosis (MS) without leaving aside the care of the physical and psychic health of those who work as caregivers.
Read the detailed description
Caregivers of subjects diagnosed with MS have to take care of many activities of MS subjects that they cannot perform themselves, because of their lack of autonomy. The fact of aiding a person with some degree of disability due to a chronic disease in an intense way and for a long time could generate a high level of satisfaction in the caregiver; but at the same time the emotional and physical exhaustion of the caregiver increases as the disease progresses. The QoL of the person who is emotionally bonded to the MS subject as a caregiver has a great chance to be affected; and this is for sure more likely than in the case when the caregiver is a hired professional.
OBJECTIVES
Primary objective:
- To identify the impact of MS on the QoL of the MS subjects and their caregivers
Secondary objectives:
- To establish the correlation between the QoL of the subjects with MS and their caregivers
- To identify the predictors of the QoL in the caregiver group
This is an observational, prospective and non-interventional study planned to be conducted in 20 centers in Argentina. The subjects with diagnosed MS will be managed with the clinical and therapeutic elements that their treating doctors considered appropriate, without modifying their decisions due to the subjects' inclusion into the study. The caregivers will be asked to complete the QoL questionnaire as a part of the normal interview on each and every visit. The total duration of the study is 24 months. A descriptive analysis will be performed for the demographic and clinical characteristics of the investigation subjects, as well as for the characteristics of the treatments they receive when they start their participation in this study. For the qualitative variables, treatment modifications, frequency tables and the percentages will be performed.
- Conditions
- Multiple Sclerosis
- Keywords
- Multiple sclerosis, Sclerosis, Quality of life
- Medical subject headings
- Multiple Sclerosis, Sclerosis
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
| Study group | Role | What they receive |
|---|---|---|
| Subjects with Multiple Sclerosis | Subjects with diagnosed MS according to the revised Mc Donald criteria 2005; aged >21 years. | |
| Caregivers | Caregivers (aged >21 years) for MS subjects. |
What is being measured
The primary outcome is the main question the study is designed to answer.
Impact of MS on QoL of subjects diagnosed with multiple sclerosis (MS) and their caregivers
SF-36 will be administered to subjects diagnosed with MS and their caregivers; Beck depression inventory and MS-Functional system scores to subjects diagnosed with MS.
Measured: Each visit starting from the initial visit (Day 0) to end of the observation period (i.e. 24 months)
Secondary outcomes (2)
Correlation between QoL of subjects with MS and their caregivers
Measured: During the observation period of 24 months starting from the initial visit (i.e. Day 0)
Predictors of QoL of caregivers
Measured: During the observation period of 24 months starting from the initial visit (i.e. Day 0)
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted25 Feb 2010 (estimated)
- Study startAug 2008
- Primary completionMar 2011
- Study completionMar 2012
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Multiple SclerosisStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Case-control
- Time perspective
- Prospective
- Enrolment
- 141 participants (actual)
Sponsor and investigators
- Lead sponsor
- Merck KGaA, Darmstadt, Germany
- Sponsor type
- Industry (pharma, biotech, devices)
- Responsible party
- Sponsor
- Investigators
- Miguel Jacobo, Neurologist, Principal investigator, 25 de Mayo 138 (Capital, Pcia. de Santiago del Estero) G4200AWD
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT01075737
- Sponsor's protocol ID
- 200077-501
- Status last verified
- Feb 2014
- First submitted
- 24 Feb 2010
- Last updated
- 17 Feb 2014
- Results posted
- No
- Data monitoring committee
- No
Study at a glance
From the registry record, last updated by the sponsor on 17 Feb 2014. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Observational Study to Assess the Quality of Life of the Caregivers of Patients With Multiple Sclerosis
- ClinicalTrials.gov ID
- NCT01075737
- Acronym / sponsor ID
- 200077-501
- Conditions
- Multiple Sclerosis
- Keywords
- Multiple sclerosis, Sclerosis, Quality of life
- Study type
- Observational
- Recruitment status
- Completed
- Enrolment
- 141 participants (actual)
- Lead sponsor
- Merck KGaA, Darmstadt, GermanyIndustry (pharma, biotech, devices)
- Study start
- Aug 2008
- Primary completion
- Mar 2011 (actual)
- Study completion
- Mar 2012 (actual)
- First posted
- 25 Feb 2010 (estimated)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
This is an observational, non controlled, non-interventional, multicentric, prospective study planned to be conducted in 450 subjects diagnosed with MS and their caregivers in 20 centres of Argentina. The observations from this study will contribute to the awareness of the impact on the Quality of Life (QoL) of the caregivers and, eventually will also provide measures for helping the subjects with multiple sclerosis (MS) without leaving aside the care of the physical and psychic health of those who work as caregivers.
Detailed description
Caregivers of subjects diagnosed with MS have to take care of many activities of MS subjects that they cannot perform themselves, because of their lack of autonomy. The fact of aiding a person with some degree of disability due to a chronic disease in an intense way and for a long time could generate a high level of satisfaction in the caregiver; but at the same time the emotional and physical exhaustion of the caregiver increases as the disease progresses. The QoL of the person who is emotionally bonded to the MS subject as a caregiver has a great chance to be affected; and this is for sure more likely than in the case when the caregiver is a hired professional.
OBJECTIVES
Primary objective:
- To identify the impact of MS on the QoL of the MS subjects and their caregivers
Secondary objectives:
- To establish the correlation between the QoL of the subjects with MS and their caregivers
- To identify the predictors of the QoL in the caregiver group
This is an observational, prospective and non-interventional study planned to be conducted in 20 centers in Argentina. The subjects with diagnosed MS will be managed with the clinical and therapeutic elements that their treating doctors considered appropriate, without modifying their decisions due to the subjects' inclusion into the study. The caregivers will be asked to complete the QoL questionnaire as a part of the normal interview on each and every visit. The total duration of the study is 24 months. A descriptive analysis will be performed for the demographic and clinical characteristics of the investigation subjects, as well as for the characteristics of the treatments they receive when they start their participation in this study. For the qualitative variables, treatment modifications, frequency tables and the percentages will be performed.
Study design
- Observational model
- Case-control
- Time perspective
- Prospective
- Number of arms
- 2
| Arm | Type | Receives |
|---|---|---|
| Subjects with Multiple Sclerosis | – | –Subjects with diagnosed MS according to the revised Mc Donald criteria 2005; aged >21 years. |
| Caregivers | – | –Caregivers (aged >21 years) for MS subjects. |
Who may qualify
- Ages
- 21 years and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older adult
- Study population
- Subjects with diagnosed MS and their caregivers in Argentinean population.
Key inclusion criteria (4 listed)
- MS subjects and their caregivers, >21 years of age of both sexes
- Subjects who have signed informed consent
- Subjects with established MS diagnosis according to the revised Mc Donald criteria - 2005 with at least 1 year of evolution
- Subjects with MS that have an identified caregiver
Key exclusion criteria (1 listed)
- Subjects with other(s) associated neurological, psychiatric or systemic disease(s)
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
Impact of MS on QoL of subjects diagnosed with multiple sclerosis (MS) and their caregivers
Time frame: Each visit starting from the initial visit (Day 0) to end of the observation period (i.e. 24 months)
SF-36 will be administered to subjects diagnosed with MS and their caregivers; Beck depression inventory and MS-Functional system scores to subjects diagnosed with MS.
2 secondary outcomes
Correlation between QoL of subjects with MS and their caregivers
Time frame: During the observation period of 24 months starting from the initial visit (i.e. Day 0)
Predictors of QoL of caregivers
Time frame: During the observation period of 24 months starting from the initial visit (i.e. Day 0)
Results and safety
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 17 Feb 2014.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
Miguel Jacobo, Neurologist principal investigator
25 de Mayo 138 (Capital, Pcia. de Santiago del Estero) G4200AWD
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Multiple Sclerosis, run by Merck KGaA, Darmstadt, Germany at 1 site in Argentina.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 4 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: finished, as of the sponsor's last update on 17 Feb 2014. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in Argentina. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Impact of MS on QoL of subjects diagnosed with multiple sclerosis (MS) and their caregivers (time frame: Each visit starting from the initial visit (Day 0) to end of the observation period (i.e. 24 months)). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 17 Feb 2014.