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| ID | Type | Description | Link |
|---|---|---|---|
| AOR - 10050 | Other Identifier | AOR |
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| Name | Class |
|---|---|
| Cabinet d'étude INTERLIS | UNKNOWN |
| Ecole des Hautes Etudes en Santé Publique | OTHER |
| URC-CIC Paris Descartes Necker Cochin | OTHER |
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The purpose of this study is to create and validate an ICF core Set for Systemic sclerosis
In 2002 was published WHO's International Classification of Functioning, Disability and Health (ICF). ICF defines disability as "the negative aspects of the interaction between an individual (with a health condition) and that individual's contextual factors (personal and environmental factors)". Interactions are specified in five domains, classified from body, individual and societal perspectives by means of two lists: a list of body functions and structure, and a list of domains of activity and participation. Since an individual's functioning and disability occurs in a context, the ICF also includes a list of environmental factors.
ICF core sets, which are short lists of ICF categories relevant for specific conditions, serve as practical tools for clinical practice and allow standardisation of data for health information and research. Core sets have already been developed and validated for several musculoskeletal diseases, such as low back pain, osteoarthritis, or osteoporosis, but not yet for systemic sclerosis.
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| Measure | Description | Time Frame |
|---|---|---|
| Validation of an ICF core Set for Systemic sclerosis | Submit the list of items to a cohort of 100 patients and experts. | Between the 13th and 24th month |
| Measure | Description | Time Frame |
|---|---|---|
| Translation of concepts identified such as items ICF (linking). | Translation of extracted data and set up the core set | Between the 10th and 12th month |
| Creation of a database from a qualitative survey |
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Inclusion Criteria:
Exclusion Criteria:
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Male or female aged 18 and older with a diagnosis of ScS made according to ACR and/or Leroy et Medsger criteria
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| Name | Affiliation | Role |
|---|---|---|
| Agathe Papelard, MD | Cochin Hospital | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Cochin Hospital | Paris | 75014 | France |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 16024476 | Background | Cieza A, Geyh S, Chatterji S, Kostanjsek N, Ustun B, Stucki G. ICF linking rules: an update based on lessons learned. J Rehabil Med. 2005 Jul;37(4):212-8. doi: 10.1080/16501970510040263. | |
| 16872536 | Background | Cieza A, Geyh S, Chatterji S, Kostanjsek N, Ustun BT, Stucki G. Identification of candidate categories of the International Classification of Functioning Disability and Health (ICF) for a Generic ICF Core Set based on regression modelling. BMC Med Res Methodol. 2006 Jul 27;6:36. doi: 10.1186/1471-2288-6-36. |
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| ID | Term |
|---|---|
| D012595 | Scleroderma, Systemic |
| ID | Term |
|---|---|
| D003240 | Connective Tissue Diseases |
| D017437 | Skin and Connective Tissue Diseases |
| D012871 | Skin Diseases |
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This database will be elaborated considering information from a qualitative survey of 100 patients, a consultation with experts and a review of the literature
| During the first 9 months |
| 10882211 | Background | Clements PJ. Systemic sclerosis (scleroderma) and related disorders: clinical aspects. Baillieres Best Pract Res Clin Rheumatol. 2000 Mar;14(1):1-16. doi: 10.1053/berh.1999.0074. |
| 16684371 | Background | Coenen M, Cieza A, Stamm TA, Amann E, Kollerits B, Stucki G. Validation of the International Classification of Functioning, Disability and Health (ICF) Core Set for rheumatoid arthritis from the patient perspective using focus groups. Arthritis Res Ther. 2006;8(4):R84. doi: 10.1186/ar1956. |
| 31219594 | Result | Papelard A, Daste C, Alami S, Sanchez K, Roren A, Segretin F, Lefevre-Colau MM, Rannou F, Mouthon L, Poiraudeau S, Nguyen C. Construction of an ICF core set and ICF-based questionnaire assessing activities and participation in patients with systemic sclerosis. Rheumatology (Oxford). 2019 Dec 1;58(12):2260-2272. doi: 10.1093/rheumatology/kez209. |
| 32017013 | Result | Daste C, Abdoul H, Foissac F, Papelard A, Alami S, Kwakkenbos L, Carrier ME, Lefevre-Colau MM, Thombs BD, Poiraudeau S, Rannou F, Mouthon L, Nguyen C. Development of a new patient-reported outcome measure to assess activities and participation in people with systemic sclerosis: the Cochin 17-item Scleroderma Functional scale. Br J Dermatol. 2020 Oct;183(4):710-718. doi: 10.1111/bjd.18922. Epub 2020 Mar 18. |