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Table des matières
  1. 1. Essai clinique
  2. 2. Routinedokumentation
  3. 3. Études de registres/cohortes
  4. 4. Assurance qualité
  5. 5. Standard de données
  6. 6. Questionnaire pour les patients
  7. 7. Spécialité médicale
    1. 7.1. Anesthésie
    1. 7.2. Dermatologie
    1. 7.3. HNO
    1. 7.4. Gériatrie
    1. 7.5. Gynécologie/obstétrique
    1. 7.6. Médecine interne
      1. Hématologie
      1. Infectiologie
      1. Cardiologie/angiologie
      1. Pneumologie
      1. Gastroentérologie
      1. Néphrologie
      1. Endocrinologie/métabolisme
      1. Rhumatologie
    1. 7.7. Neurologie
    1. 7.8. Ophtalmologie
    1. 7.9. Médecine palliative
    1. 7.10. Pathologie/médécine légale
    1. 7.11. Pédiatrie
    1. 7.12. Psychiatrie/psychosomatique
    1. 7.13. Radiologie
    1. 7.14. Chirurgie
      1. Chirurgie générale/viscérale
      1. Neurochirurgie
      1. Chirurgie plastique
      1. Chirurgie cardiaque/thoracique
      1. Chirurgie traumatologique/orthopédie
      1. Chirurgie vasculaire
    1. 7.15. Urologie
    1. 7.16. Médecine dentaire/MKG
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Pediatric Risk of Mortality (PRISM) Score for Children

- 25/01/2018 - 1 Formulaire, 1 Groupe Item, 15 Eléments de données, 1 Langue
Groupe Item: PRISM score for children
"The Pediatric Risk of Mortality (PRISM) score was developed from the Physiologic Stability Index (PSI) to reduce the number of physiologic variables required for pediatric ICU (PICU) mortality risk assessment and to obtain an objective weighting of the remaining variables." Version for children(>1 year) Reference: Pollack, M. M., Ruttimann, U. E., & Getson, P. R. (1988). Pediatric risk of mortality (PRISM) score. Critical care medicine, 16(11), 1110-1116.

Calcium Intake - Children PhenX Toolkit

- 26/04/2016 - 1 Formulaire, 1 Groupe Item, 21 Eléments de données, 1 Langue
Groupe Item: PhenX - calcium intake - pediatric protocol
These self-administered questions are for use with children of middle school-age (aged 11-14 years). Each question has a multichoice answer. Pictures help guide the children’s responses to the questions. ODM derived from: https://cde.nlm.nih.gov Primary source: https://www.phenxtoolkit.org/ Recent publication: Hendershot, T., Pan, H., Haines, J., Harlan, W.R., Marazita, M.L., McCarty, C.A., Ramos, E.M., and Hamilton, C.M. (2015) Using the PhenX toolkit to add standard measures to a study. Curr. Protoc. Hum. Genet. 86:1.21.1-1.21.17. doi: 10.1002/0471142905.hg0121s86 Permission to publish granted by Carol M. Hamilton.

Pediatric Risk of Mortality (PRISM) Score for Infants

- 25/01/2018 - 1 Formulaire, 1 Groupe Item, 15 Eléments de données, 1 Langue
Groupe Item: PRISM score for infants
"The Pediatric Risk of Mortality (PRISM) score was developed from the Physiologic Stability Index (PSI) to reduce the number of physiologic variables required for pediatric ICU (PICU) mortality risk assessment and to obtain an objective weighting of the remaining variables." Version for infants (0-1 year) Reference: Pollack, M. M., Ruttimann, U. E., & Getson, P. R. (1988). Pediatric risk of mortality (PRISM) score. Critical care medicine, 16(11), 1110-1116.

NINDS CDE Pediatric Developmental History Multiple Sclerosis - Pediatric Developmental History

- 26/06/2016 - 1 Formulaire, 5 Groupes Item, 46 Eléments de données, 1 Langue
Groupes Item: Early Life Nutrition, Early Development, Educational History, Cognitive, Vaccinations
NINDS Common Data Elements, Multiple Sclerosis Pediatric Developmental History Used from the National Institute of Neurological Disorders and Stroke Common Data Elements (https://www.commondataelements.ninds.nih.gov/) References: Grinnon ST, Miller K, Marler JR, Lu Y, Stout A, Odenkirchen J, Kunitz S. National Institute of Neurological Disorders and Stroke Common Data Element Project - approach and methods. Clin Trials. 2012;9(3):322-9.

Sentinel Common Data Model - Mother-Infant Linkage

- 25/08/2019 - 1 Formulaire, 1 Groupe Item, 14 Eléments de données, 1 Langue
Groupe Item: Mother-Infant Linkage
Sentinel: Overview and Description of the Common Data Model v7.0: The primary goal ofSentinel is to build and operate a national public health surveillance system to monitor the safety of FDA-regulated medical products, including drugs, biologics, and devices. Sentinel is part of the Sentinel Initiative, the FDA’s response to a congressional mandate to create an active surveillance system using electronic health data.The Sentinel program will undertake three major types of activities: (1) prospective evaluation of accumulating experience about specific medical products and specific suspected safety problems; (2) evaluation of the impact of FDA actions (e.g., labeling changes) on medical practice and health outcomes; and (3) rapid assessment of past experience in response to FDA questions about specific exposures and outcomes. The SCDM Mother-Infant Linkage Table contains one record per MPatID, CPatID, and ADate. This table is created following identification of mothers (via evidence of live delivery by women aged 10-54 inclusive) and infants (via date of birth) in the Sentinel Distributed Database (SDD)

ICHOM Paediatric Facial Palsy - End of pediatric or planned care - Clinical Form

- 30/04/2020 - 1 Formulaire, 4 Groupes Item, 25 Eléments de données, 1 Langue
Groupes Item: Administrative Data, Patient Demographic Factors, Clinical Status, Degree of Health
ICHOM Paediatric Facial Palsy data collection Version 1.0.0 Revised: August 31st, 2018 International Consortium for Health Outcomes Measurement (ICHOM), Source: http://www.ichom.org/ Notice: This work was conducted using resources from ICHOM, the International Consortium for Health Outcomes Measurement (www.ICHOM.org). The content is solely the responsibility of the authors and does not necessarily represent the official views of ICHOM. For Paediatric Facial Palsy, the following conditions and treatment approaches (or interventions) are covered by ICHOM‘s Standard Set. Conditions: Congenital/Syndromic | Acquired Unilateral (single- and multi-territory) | Bilateral (single- and multi-territory) Treatment approaches: Medical treatment | Surgery | Eye care Physiotherapy/Occupational therapy | Botulinum toxin | Psychological support This document contains the End of pediatric or planned care - Clinical Form. It should be completed at the end of paediatric care (16y to 18y) or when no further treatments are planned, and allow for >1 year follow-up. Collecting Patient-Reported Outcome Measure: eFACE – Clinician. For more information see: Banks CA, Bhama PK, Park J, Hadlock CR, Hadlock TA. Clinician-Graded Electronic Facial Paralysis Assessment: The eFACE, August 2015. doi: 10.1097/PRS.0000000000001447 FACE-Q Kids. As there is a license for use of this questionnaire, the questions will not be included in this version of the standard set, only subscores. Snellen Chart – Clinician. PROMIS Paediatric Global Health 7 and PROMIS Pediatric Peer Relationships SF 8a. As there is an official distribution site, only the total score of these questionnaires will be included in this version of the standard set. For more information see: http://www. healthmeasures.net/explore-measurement-systems/promis/ obtain-administer-measures Reference: Butler DP, De la Torre A, Borschel GH, et al. An International Collaborative Standardizing Patient-Centered Outcome Measures in Pediatric Facial Palsy. JAMA Facial Plast Surg. Published online May 09, 2019. doi:10.1001/jamafacial.2019.0224 The Standard set of ICHOM was supported by the royal free charity and the Dianne and Michael Bienes Charitable Foundation Inc. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Paediatric Facial Palsy - Ongoing, End of pediatric or planned care - Parent-reported Form

- 30/04/2020 - 1 Formulaire, 3 Groupes Item, 11 Eléments de données, 1 Langue
Groupes Item: Administrative Data, Patient Demographic Factors, Degree of Health
ICHOM Paediatric Facial Palsy data collection Version 1.0.0 Revised: August 31st, 2018 International Consortium for Health Outcomes Measurement (ICHOM), Source: http://www.ichom.org/ Notice: This work was conducted using resources from ICHOM, the International Consortium for Health Outcomes Measurement (www.ICHOM.org). The content is solely the responsibility of the authors and does not necessarily represent the official views of ICHOM. For Paediatric Facial Palsy, the following conditions and treatment approaches (or interventions) are covered by ICHOM‘s Standard Set. Conditions: Congenital/Syndromic | Acquired Unilateral (single- and multi-territory) | Bilateral (single- and multi-territory) Treatment approaches: Medical treatment | Surgery | Eye care Physiotherapy/Occupational therapy | Botulinum toxin | Psychological support This document contains the Ongoing, End of pediatric or planned care - Parent-reported Form. It includes several documents. Please fill in for: Pre-Intervention, Post-Intervention, 5 and 11 years of age Follow-up and at the End of pediatric or planned care. The Post-Intervention time point depends on the type of intervention - reflects the time of maximum treatment benefit and varies from 1 month to 2 years. Fill in for: - Periocular treatment (excluding FFMT): After 1 month and 1 year - FFMT: After 1 and 2 years - Non-periocular static procedures: After 1 year - RMT, Psychology, Facial therapy, Botox, Other: After 1 year Collecting Patient-Reported Outcome Measure: eFACE – Clinician. For more information see: Banks CA, Bhama PK, Park J, Hadlock CR, Hadlock TA. Clinician-Graded Electronic Facial Paralysis Assessment: The eFACE, August 2015. doi: 10.1097/PRS.0000000000001447 FACE-Q Kids. As there is a license for use of this questionnaire, the questions will not be included in this version of the standard set, only subscores. Snellen Chart – Clinician. PROMIS Paediatric Global Health 7 and PROMIS Pediatric Peer Relationships SF 8a. As there is an official distribution site, only the total score of these questionnaires will be included in this version of the standard set. For more information see: http://www. healthmeasures.net/explore-measurement-systems/promis/ obtain-administer-measures Reference: Butler DP, De la Torre A, Borschel GH, et al. An International Collaborative Standardizing Patient-Centered Outcome Measures in Pediatric Facial Palsy. JAMA Facial Plast Surg. Published online May 09, 2019. doi:10.1001/jamafacial.2019.0224 The Standard set of ICHOM was supported by the royal free charity and the Dianne and Michael Bienes Charitable Foundation Inc. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

Measurement Instrument Database for the Social Science (MIDSS) - Childhood Autism Syndrome Test (CAST)

- 18/08/2020 - 1 Formulaire, 3 Groupes Item, 56 Eléments de données, 1 Langue
Groupes Item: General Information Section, Childhood Autism Sydrome Test (CAST), Special Needs Section
Scott, F. J., Baron-Cohen, S., Bolton, P. and Brayne, C.. (2002). Childhood Autism Syndrome Test (CAST). Measurement Instrument Database for the Social Science. Retrieved 16.08.2020, from www.midss.ie Key references: Scott, F. J., Baron-Cohen, S., Bolton, P. and Brayne, C. (2002). The CAST (Childhood Asperger Syndrome Test): Preliminary development of UK screen for mainstream primary-school children. Autism 6(1),9-31. Williams, J. Scott, F. Allison, C. Bolton, P. Baron- Cohen, S. and Brayne, C. (2004). The CAST (Childhood Asperger Syndrome Test) : test accuracy Autism, 8, 45-68. Primary use / Purpose: The CAST is used for Autism spectrum disorders screening, among children aged 5 to 11. It includes 37 categorical (yes/no) items on behaviours relevant to autism spectrum disorders. Background: While diagnosis of typical autism will usually occur in early childhood, Aspergers syndrome and other pervasive developmental disorders may be missed until much later. The Childhood Autism Syndrome Test (CAST) allows detection of such cases which may need further assessment. Psychometrics: Reliability and validity of the CAST are discussed in Williams, Scott, Allison, Bolton, Baron- Cohen, and Brayne (2004). Web link to tool and scoring key: https://www.autismresearchcentre.com/arc_tests/ Digital Object Identifier (DOI): http://dx.doi.org/10.13072/midss.181

Sleep Apnea - Child Protocol PhenX Toolkit

- 20/09/2021 - 1 Formulaire, 6 Groupes Item, 106 Eléments de données, 1 Langue
Groupes Item: PhenX - respiratory - sleep apnea - child protocol, Long - term medical problem, Medication list, Psychological, psychiatric, emotional, or behavioral problem, Sleep disorders, Sleep or behavior disorders relatives
The Pediatric Sleep Questionnaire (PSQ) protocol is a parent questionnaire for children from 2 through 18 years, and rated on a simple three-point scale ("yes," "no," or "don’t know") for all items except the inattention/hyperactivity items that are rated on a four-point Likert scale. This protocol provides an overall total score and five sleep scales: (1) Sleep-Related Breathing Disorders (SRBD), (2) Snoring, (3) Sleepiness, (4) Behavior, and (5) Periodic Limb Movement Disorder (PLMD). ODM derived from: https://cde.nlm.nih.gov Primary source: https://www.phenxtoolkit.org/ Recent publication: Hendershot, T., Pan, H., Haines, J., Harlan, W.R., Marazita, M.L., McCarty, C.A., Ramos, E.M., and Hamilton, C.M. (2015) Using the PhenX toolkit to add standard measures to a study. Curr. Protoc. Hum. Genet. 86:1.21.1-1.21.17. doi: 10.1002/0471142905.hg0121s86 Permission to publish granted by Carol M. Hamilton.

ICHOM Paediatric Facial Palsy - Pre-Intervention - Patient Form

- 30/04/2020 - 1 Formulaire, 2 Groupes Item, 17 Eléments de données, 1 Langue
Groupes Item: Administrative Data, Degree of Health
ICHOM Paediatric Facial Palsy data collection Version 1.0.0 Revised: August 31st, 2018 International Consortium for Health Outcomes Measurement (ICHOM), Source: http://www.ichom.org/ Notice: This work was conducted using resources from ICHOM, the International Consortium for Health Outcomes Measurement (www.ICHOM.org). The content is solely the responsibility of the authors and does not necessarily represent the official views of ICHOM. For Paediatric Facial Palsy, the following conditions and treatment approaches (or interventions) are covered by ICHOM‘s Standard Set. Conditions: Congenital/Syndromic | Acquired Unilateral (single- and multi-territory) | Bilateral (single- and multi-territory) Treatment approaches: Medical treatment | Surgery | Eye care Physiotherapy/Occupational therapy | Botulinum toxin | Psychological support This document contains the Pre-Intervention - Patient Form. It has to be filled in prior to any new treatment (any invasive or non-invasive). Valid for 6 months if multiple interventions started within this period. If patient < 8 years, please take the parentreported Form. Collecting Patient-Reported Outcome Measure: eFACE – Clinician. For more information see: Banks CA, Bhama PK, Park J, Hadlock CR, Hadlock TA. Clinician-Graded Electronic Facial Paralysis Assessment: The eFACE, August 2015. doi: 10.1097/PRS.0000000000001447 FACE-Q Kids. As there is a license for use of this questionnaire, the questions will not be included in this version of the standard set, only subscores. Snellen Chart – Clinician. PROMIS Paediatric Global Health 7 and PROMIS Pediatric Peer Relationships SF 8a. As there is an official distribution site, only the total score of these questionnaires will be included in this version of the standard set. For more information see: http://www. healthmeasures.net/explore-measurement-systems/promis/ obtain-administer-measures Reference: Butler DP, De la Torre A, Borschel GH, et al. An International Collaborative Standardizing Patient-Centered Outcome Measures in Pediatric Facial Palsy. JAMA Facial Plast Surg. Published online May 09, 2019. doi:10.1001/jamafacial.2019.0224 The Standard set of ICHOM was supported by the royal free charity and the Dianne and Michael Bienes Charitable Foundation Inc. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Paediatric Facial Palsy - 5 and 11 years of age follow-up - Clinical Form

- 30/04/2020 - 1 Formulaire, 5 Groupes Item, 26 Eléments de données, 1 Langue
Groupes Item: Administrative Data, Patient Demographic Factors, Clinical Status, Other, Degree of Health
ICHOM Paediatric Facial Palsy data collection Version 1.0.0 Revised: August 31st, 2018 International Consortium for Health Outcomes Measurement (ICHOM), Source: http://www.ichom.org/ Notice: This work was conducted using resources from ICHOM, the International Consortium for Health Outcomes Measurement (www.ICHOM.org). The content is solely the responsibility of the authors and does not necessarily represent the official views of ICHOM. For Paediatric Facial Palsy, the following conditions and treatment approaches (or interventions) are covered by ICHOM‘s Standard Set. Conditions: Congenital/Syndromic | Acquired Unilateral (single- and multi-territory) | Bilateral (single- and multi-territory) Treatment approaches: Medical treatment | Surgery | Eye care Physiotherapy/Occupational therapy | Botulinum toxin | Psychological support This document contains the 5 and 11 years of age follow-up - Clinical Form. This document is intended to represent the developmental stages of the patient. It has to be filled in at the ages of 5 and 11 years. Collecting Patient-Reported Outcome Measure: eFACE – Clinician. For more information see: Banks CA, Bhama PK, Park J, Hadlock CR, Hadlock TA. Clinician-Graded Electronic Facial Paralysis Assessment: The eFACE, August 2015. doi: 10.1097/PRS.0000000000001447 FACE-Q Kids. As there is a license for use of this questionnaire, the questions will not be included in this version of the standard set, only subscores. Snellen Chart – Clinician. PROMIS Paediatric Global Health 7 and PROMIS Pediatric Peer Relationships SF 8a. As there is an official distribution site, only the total score of these questionnaires will be included in this version of the standard set. For more information see: http://www. healthmeasures.net/explore-measurement-systems/promis/ obtain-administer-measures Reference: Butler DP, De la Torre A, Borschel GH, et al. An International Collaborative Standardizing Patient-Centered Outcome Measures in Pediatric Facial Palsy. JAMA Facial Plast Surg. Published online May 09, 2019. doi:10.1001/jamafacial.2019.0224 The Standard set of ICHOM was supported by the royal free charity and the Dianne and Michael Bienes Charitable Foundation Inc. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Paediatric Facial Palsy - Baseline - Clinical Form

- 30/04/2020 - 1 Formulaire, 5 Groupes Item, 32 Eléments de données, 1 Langue
Groupes Item: Administrative Data, Patient Demographic Factors, Baseline Clinical Status, Other, Degree of Health
ICHOM Paediatric Facial Palsy data collection Version 1.0.0 Revised: August 31st, 2018 International Consortium for Health Outcomes Measurement (ICHOM), Source: http://www.ichom.org/ Notice: This work was conducted using resources from ICHOM, the International Consortium for Health Outcomes Measurement (www.ICHOM.org). The content is solely the responsibility of the authors and does not necessarily represent the official views of ICHOM. For Paediatric Facial Palsy, the following conditions and treatment approaches (or interventions) are covered by ICHOM‘s Standard Set. Conditions: Congenital/Syndromic | Acquired Unilateral (single- and multi-territory) | Bilateral (single- and multi-territory) Treatment approaches: Medical treatment | Surgery | Eye care Physiotherapy/Occupational therapy | Botulinum toxin | Psychological support This document contains the Baseline - Clinical Form. It has to be filled in at Patient's first encounter/visit. Collecting Patient-Reported Outcome Measure: eFACE – Clinician. For more information see: Banks CA, Bhama PK, Park J, Hadlock CR, Hadlock TA. Clinician-Graded Electronic Facial Paralysis Assessment: The eFACE, August 2015. doi: 10.1097/PRS.0000000000001447 FACE-Q Kids. As there is a license for use of this questionnaire, the questions will not be included in this version of the standard set, only subscores. Snellen Chart – Clinician. PROMIS Paediatric Global Health 7 and PROMIS Pediatric Peer Relationships SF 8a. As there is an official distribution site, only the total score of these questionnaires will be included in this version of the standard set. For more information see: http://www. healthmeasures.net/explore-measurement-systems/promis/ obtain-administer-measures Reference: Butler DP, De la Torre A, Borschel GH, et al. An International Collaborative Standardizing Patient-Centered Outcome Measures in Pediatric Facial Palsy. JAMA Facial Plast Surg. Published online May 09, 2019. doi:10.1001/jamafacial.2019.0224 The Standard set of ICHOM was supported by the royal free charity and the Dianne and Michael Bienes Charitable Foundation Inc. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

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