Rheumatologic DiseaseImpactSurveyNCT06461000
EULAR Impact of Rheumatic and Musculoskeletal Diseases Survey
An observational study of Rheumatologic Disease and Musculoskeletal Diseases, run by European Alliance of Associations in Rheumatology at 1 site in Switzerland.
Trial summary
The EULAR Impact of RMDs Survey collects first-hand information about the impact of rheumatic and musculoskeletal diseases (RMDs) among patients across and beyond Europe. Through periodic questionnaires, patients will provide information about their healthcare situation, and how the disease affects their social and… Read more about this study
- Who is it for?
- Ages 18 years and older
- Conditions the study is for
- Rheumatologic Disease, Musculoskeletal Diseases
- What is being tested?
- Survey
- How many people
- 1,000 participants
- Where
- 1 siteSwitzerland
- Study dates
- 12 Jun 2025to 12 Jun 2029
- How long will I take part?
- 5 Years
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
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 18 years and older
- All sexes
- No healthy volunteers
- Adult, Older adult
Study population: - adults with at least 1 RMD
Who may be able to join
- 18-year-old at time of baseline survey
- Living in a EULAR country at time of baseline survey
- Diagnosed with at least one RMD
- Valid personal e-mail address
- Being able to use an internet website
Who cannot join
- none
Trial locations and contacts
1 site in 1 country. Contact the study team or a site near you to ask about taking part.
Switzerland1 site, 1 recruiting
- Recruiting
EULAR
Kilchberg, Canton of Zurich, 8802
Coralie Signorell, PhD, +41 44 575 15 64, research@eular.org
About this study
The EULAR Impact of RMDs Survey collects first-hand information about the impact of rheumatic and musculoskeletal diseases (RMDs) among patients across and beyond Europe. Through periodic questionnaires, patients will provide information about their healthcare situation, and how the disease affects their social and occupational lives. This data will be an important resource for researchers, healthcare professionals, and patients alike, providing valuable insights into the burden of disease and helping improve the overall care for people living with these conditions.
- Conditions
- Rheumatologic Disease, Musculoskeletal Diseases
- Being tested
- Survey
- Medical subject headings
- Collagen Diseases, Musculoskeletal Diseases
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
SurveyOther
online survey for participants
| Study group | Role | What they receive |
|---|---|---|
| Survey | Usual survey Receives: Other: Survey |
What is being measured
The primary outcome is the main question the study is designed to answer.
General population description - country
country of residence
Measured: every 6 months for up to 5 years
General population description - diagnosis
diagnosis (name of the disease)
Measured: every 6 months for up to 5 years
General population description
year of birth
Measured: every 6 months for up to 5 years
Secondary outcomes (14)
Diagnosis history - physician treating the RMD
Primary physician specialty treating the patient
Measured: every 6 months for up to 5 years
Diagnosis history - outpatient care history
number of medical appointments for the past 6 months
Measured: every 6 months for up to 5 years
Diagnosis history - timeline
waiting time for medical appointments and time spent in medical appointments
Measured: every 6 months for up to 5 years
Diagnosis history - Inpatient care
number of days of hospitalization during the past 6 months.
Measured: every 6 months for up to 5 years
Non-pharmacological and pharmacological treatments.
Names of medications taken by the patients (from a list)
Measured: every 6 months for up to 5 years
Other chronic diseases
diagnosis of chronic diseases other than RMD and medication taken for these conditions.
Measured: every 6 months for up to 5 years
Disease burden - impact of disease
Rheumatic Arthritis Impact of Disease (RAID) version 7 questionnaire. The RAID is calculated based on 7 Numerical rating scales (NRS) questions. Each NRS is assessed as a number between 0 and 10. The 7 NRS correspond to pain, function, fatigue, sleep, emotional well-being, physical well-being, and coping/self-efficacy. The range of the final RAID value is 0-10 where higher figures indicate worse status.
Measured: every 6 months for up to 5 years
Disease burden - health assessment
Health assessment questionnaire version 2 (HAQ2). The HAQ comprises of 20 questions covering 20 daily activities. These are divided in eight domains: dressing and grooming, rising, eating, walking, hygiene, reaching, gripping, and other activities. Each question is scored according to a four-point scale (0-3), and the highest scores from each domain are summed and divided by eight, to derive a total HAQ score, which ranges from 0 to 3 (3 = highest level of disability).
Measured: every 6 months for up to 5 years
Disease burden - quality of life
patient health questionnaire (PHQ-8). The PHQ-8 is a self-reported measure of depressive symptoms composed of 8 Likert type items with a response scale ranging from 0 (Not at all) to 3 (Nearly every day), that refer to the presence of that symptom during the previous 2 weeks.Each item corresponds to the first 8 symptoms of the 4th edition of the DSM-IV diagnostic criteria for major depressive disorder. The PHQ-8 final score is obtained by adding the score for each of the items, ranging from 0 to 24 (higher scores corresponding to higher levels of depression).
Measured: every 6 months for up to 5 years
Consequences on work and life (WPAI questionnaire)
work productivity and activity impairment questionnaire (WPAI), including total number of sick leave days due to RMD in the past 6 months. Final score is calculated in % higher scores on the WPAI indicate worse outcomes
Measured: every 6 months for up to 5 years
Other barriers due to RMD
impact on family, leisure, social and work activities (quality of life questionnaire)
Measured: every 6 months for up to 5 years
Health care
support from professionals (general questionnaire), satisfaction with care (scale, 1= low, 5 = high satisfaction)
Measured: every 6 months for up to 5 years
Demographics - persons living with patient
number of persons living in household
Measured: every 6 months for up to 5 years
Demographics - professional status
professional status
Measured: every 6 months for up to 5 years
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted14 Jun 2024
- Study start12 Jun 2025
- Primary completion12 Jun 2028 (estimated)
- Study completion12 Jun 2029 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Rheumatologic DiseaseStudies 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
- Cohort
- Time perspective
- Prospective
- Enrolment
- 1,000 participants (estimated)
- Target duration
- 5 Years
Sponsor and investigators
- Lead sponsor
- European Alliance of Associations in Rheumatology
- Sponsor type
- University, hospital or other
- Responsible party
- Sponsor
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT06461000
- Sponsor's protocol ID
- EPI001
- Acronym
- ImpactSurvey
- Status last verified
- Nov 2025
- First submitted
- 4 Jun 2024
- Last updated
- 21 Nov 2025
- Results posted
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- No
Study at a glance
From the registry record, last updated by the sponsor on 21 Nov 2025. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- EULAR Impact of Rheumatic and Musculoskeletal Diseases Survey
- ClinicalTrials.gov ID
- NCT06461000
- Acronym / sponsor ID
- ImpactSurvey / EPI001
- Conditions
- Rheumatologic Disease, Musculoskeletal Diseases
- Study type
- Observational
- Recruitment status
- Recruiting
- Enrolment
- 1,000 participants (estimated)
- Lead sponsor
- European Alliance of Associations in RheumatologyUniversity, hospital or other
- Study start
- 12 Jun 2025 (actual)
- Primary completion
- 12 Jun 2028 (estimated)
- Study completion
- 12 Jun 2029 (estimated)
- First posted
- 14 Jun 2024 (actual)
- 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.
The EULAR Impact of RMDs Survey collects first-hand information about the impact of rheumatic and musculoskeletal diseases (RMDs) among patients across and beyond Europe. Through periodic questionnaires, patients will provide information about their healthcare situation, and how the disease affects their social and occupational lives. This data will be an important resource for researchers, healthcare professionals, and patients alike, providing valuable insights into the burden of disease and helping improve the overall care for people living with these conditions.
Study design
- Observational model
- Cohort
- Time perspective
- Prospective
- Target follow-up
- 5 Years
- Number of arms
- 1
| Arm | Type | Receives |
|---|---|---|
| Survey | – | Other: SurveyUsual survey |
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older adult
- Study population
- - adults with at least 1 RMD
Key inclusion criteria (5 listed)
- 18-year-old at time of baseline survey
- Living in a EULAR country at time of baseline survey
- Diagnosed with at least one RMD
- Valid personal e-mail address
- Being able to use an internet website
Key exclusion criteria (1 listed)
- none
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| Surveyonline survey for participants | Other | Survey |
Primary outcome
General population description - country
Time frame: every 6 months for up to 5 years
country of residence
General population description - diagnosis
Time frame: every 6 months for up to 5 years
diagnosis (name of the disease)
General population description
Time frame: every 6 months for up to 5 years
year of birth
14 secondary outcomes
Diagnosis history - physician treating the RMD
Time frame: every 6 months for up to 5 years
Diagnosis history - outpatient care history
Time frame: every 6 months for up to 5 years
Diagnosis history - timeline
Time frame: every 6 months for up to 5 years
Diagnosis history - Inpatient care
Time frame: every 6 months for up to 5 years
Non-pharmacological and pharmacological treatments.
Time frame: every 6 months for up to 5 years
Other chronic diseases
Time frame: every 6 months for up to 5 years
Disease burden - impact of disease
Time frame: every 6 months for up to 5 years
Disease burden - health assessment
Time frame: every 6 months for up to 5 years
Disease burden - quality of life
Time frame: every 6 months for up to 5 years
Consequences on work and life (WPAI questionnaire)
Time frame: every 6 months for up to 5 years
Other barriers due to RMD
Time frame: every 6 months for up to 5 years
Health care
Time frame: every 6 months for up to 5 years
Demographics - persons living with patient
Time frame: every 6 months for up to 5 years
Demographics - professional status
Time frame: every 6 months for up to 5 years
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 21 Nov 2025.
- EULAR Impact of RMDs SurveyLink provided by the sponsor.
- Individual participant dataSharing planned: No
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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.
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 Rheumatologic Disease and Musculoskeletal Diseases, run by European Alliance of Associations in Rheumatology at 1 site in Switzerland.
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 5 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: looking for participants now, as of the sponsor's last update on 21 Nov 2025. 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 Switzerland. 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?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Coralie Signorell, PhD (0445751564, coralie.signorell@eular.org), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
General population description - country (time frame: every 6 months for up to 5 years). The study lists 3 primary outcomes in all. 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 21 Nov 2025.