Trial document





This trial has been registered retrospectively.
drksid header

  DRKS00014777

Trial Description

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Title

Detection of pain-associated, rare diseases by pain-drawing (Ehlers-Danlos-Syndrom, Guillain-Barré-Syndrom)

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Trial Acronym

DssEmS1

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URL of the Trial

http://nicht vorhanden

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Brief Summary in Lay Language

The aim of the study is to identify repetitive patterns in pain-drawings of patients with rare diseases and thus investigate whether the detection of rare diseases can be accelerated by pain-drawing.

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Brief Summary in Scientific Language

The aim of the study is to identify repetitive patterns in pain-drawings of patients with rare diseases and thus investigate whether the detection of rare diseases can be accelerated by pain-drawing.

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Organizational Data

  •   DRKS00014777
  •   2018/06/01
  •   [---]*
  •   yes
  •   Approved
  •   100/17, Ethik-Kommission der Medizinischen Fakultät der Rheinischen Friedrich-Wilhelms-Universität Bonn
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Secondary IDs

  • [---]*
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Health Condition or Problem studied

  •   Q79.6 -  Ehlers-Danlos syndrome
  •   G61.0 -  Guillain-Barré syndrome
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Interventions/Observational Groups

  •   Patients over 18 years with assured diagnoses Ehlers-Danlos-Syndrome or Guillain-Barré-Syndrome receive an informed consent, a questionnaire to describe their pain and a pain-drawing, which they send back in a postage-paid return envelope.
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Characteristics

  •   Non-interventional
  •   Observational study
  •   Single arm study
  •   Open (masking not used)
  •   [---]*
  •   Uncontrolled/Single arm
  •   Diagnostic
  •   Single (group)
  •   N/A
  •   N/A
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Primary Outcome

No outcome defined. The aim of the study is to identify repetitive patterns in pain-drawings of patients with rare diseases and thus investigate whether the detection of rare diseases can be accelerated by pain-drawing. The minimum number of participants is 30 / disease.

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Secondary Outcome

no outcome defined

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Countries of Recruitment

  •   Germany
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Locations of Recruitment

  • University Medical Center 
  • Doctor's Practice 
  • other 
  • other 
  • other 
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Recruitment

  •   Actual
  •   2017/06/01
  •   60
  •   Multicenter trial
  •   National
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Inclusion Criteria

  •   Both, male and female
  •   18   Years
  •   no maximum age
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Additional Inclusion Criteria

assured diagnosis (Ehlers-Danlos-Syndrom, Guillain-Barré-Syndrom), signed informed consent

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Exclusion Criteria

age under 18, no informed consent, diagnosis not assured

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Addresses

  • start of 1:1-Block address primary-sponsor
    • Zentrum für seltene Erkrankungen Bonn
    • Mr.  PD Dr.  Martin  Mücke 
    • Sigmund-Freud Straße 25
    • 53105  Bonn
    • Germany
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    • Zentrum für seltene Erkrankungen Bonn
    • Mr.  PD Dr.  Martin  Mücke 
    • Sigmund-Freud Straße 25
    • 53105  Bonn
    • Germany
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    end of 1:1-Block address contact scientific-contact
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    • Zentrum für seltene Erkrankungen Bonn
    • Ms.  Larissa  Wester 
    • Sigmund-Freud-Straße 25
    • 53105  Bonn
    • Germany
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Sources of Monetary or Material Support

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    • Zentrum für seltene Erkrankungen Bonn
    • Sigmund-Freud-Straße 25
    • 53127  Bonn
    • Germany
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    •   [---]*
    •   [---]*
    •   [---]*
    •   [---]*
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Status

  •   Recruiting ongoing
  •   [---]*
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Trial Publications, Results and other Documents

  • [---]*
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* This entry means the parameter is not applicable or has not been set.