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NCT Number: NCT06461000

EULAR Impact of Rheumatic and Musculoskeletal Diseases Survey

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.

Recruiting

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Key information

Conditions

Rheumatologic Disease Collagen Diseases Connective Tissue Diseases Musculoskeletal Diseases Skin and Connective Tissue Diseases

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

  • 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

Exclusion criteria

  • none

Treatment and study plan

Survey

Other

online survey for participants

Primary outcomes

  1. General population description - country

    Time frame: every 6 months for up to 5 years

    country of residence

  2. General population description - diagnosis

    Time frame: every 6 months for up to 5 years

    diagnosis (name of the disease)

  3. General population description

    Time frame: every 6 months for up to 5 years

    year of birth

Secondary outcomes

  1. Diagnosis history - physician treating the RMD

    Time frame: every 6 months for up to 5 years

    Primary physician specialty treating the patient

  2. Diagnosis history - outpatient care history

    Time frame: every 6 months for up to 5 years

    number of medical appointments for the past 6 months

  3. Diagnosis history - timeline

    Time frame: every 6 months for up to 5 years

    waiting time for medical appointments and time spent in medical appointments

  4. Diagnosis history - Inpatient care

    Time frame: every 6 months for up to 5 years

    number of days of hospitalization during the past 6 months.

  5. Non-pharmacological and pharmacological treatments.

    Time frame: every 6 months for up to 5 years

    Names of medications taken by the patients (from a list)

  6. Other chronic diseases

    Time frame: every 6 months for up to 5 years

    diagnosis of chronic diseases other than RMD and medication taken for these conditions.

  7. Disease burden - impact of disease

    Time frame: every 6 months for up to 5 years

    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.

  8. Disease burden - health assessment

    Time frame: every 6 months for up to 5 years

    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).

  9. Disease burden - quality of life

    Time frame: every 6 months for up to 5 years

    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).

  10. Consequences on work and life (WPAI questionnaire)

    Time frame: every 6 months for up to 5 years

    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

  11. Other barriers due to RMD

    Time frame: every 6 months for up to 5 years

    impact on family, leisure, social and work activities (quality of life questionnaire)

  12. Health care

    Time frame: every 6 months for up to 5 years

    support from professionals (general questionnaire), satisfaction with care (scale, 1= low, 5 = high satisfaction)

  13. Demographics - persons living with patient

    Time frame: every 6 months for up to 5 years

    number of persons living in household

  14. Demographics - professional status

    Time frame: every 6 months for up to 5 years

    professional status

Study contacts

Contact information is provided by the study sponsor or research team.

Carina Haupt

CONTACT

[email protected]

+41 44 716 30 46

Coralie Signorell, PhD

CONTACT

[email protected]

0445751564

Sponsors and collaborators

Lead sponsor

European Alliance of Associations in Rheumatology

Other

Registry information

Acronym: ImpactSurvey

Important dates

Study start
2025
Primary completion
2028
Study completion
2029
First posted
Jun 14, 2024
Registry last updated
Nov 21, 2025

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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