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Top 300 Dataset of the Medical Informatics Initiative Germany (MII) - Laboratory Tests (Overview)

- 4/29/19 - 1 form, 1 itemgroup, 300 items, 2 languages
Itemgroup: Laboratory Tests
The Top 300 Dataset (Kerndatensatz Labor) was developed by the Medical Informatics Initiative Germany (MII) and contains frequency-sorted, LOINC-coded analyses of the university clinics in Göttingen, Gießen, Munich, Greifswald and Erlangen. This form shows an overview of the preferred presentation of the most common laboratory parameters. Official german translations were used where available. https://www.medizininformatik-initiative.de/de/labordaten-in-der-medizininformatik-initiative Explanation of abbreviations (english / german): Bld = Blood / Blut BldA = arterial blood / arterielles Blut Ser = Serum / Serum Plas = Plasma / Plasma RBC = Red blood cells / Erythrozyten PPP = Platelet poor plasma / plättchenarmes Plasma Urine sed = Urine sediment / Urinsediment CSF = Cerebral spinal fluid / Liquor Body fld = Body fluid / Körperflüssigkeit

ISARIC/WHO Novel Coronavirus (nCoV) / COVID-19 Case Record Form - MODULE 3: OUTCOME CASE REPORT FORM

- 9/20/21 - 1 form, 12 itemgroups, 138 items, 1 language
Itemgroups: Participant Identification, Treatment, Complications, Diagnostics, Biospecimen Testing, Antiviral therapy, Antibiotic therapy, Corticosteroids, Heparin, Antifungal therapy, Other treatments administered for COVID-19, Outcome
This CRF is set up in modules to be used for recording data on the ISARIC COVID-19 Core Database or for independent studies. Module 1 and Module 2 complete on the first day of presentation/admission or on first day of COVID-19 assessment. Module 2 also complete on first day of admission to ICU or high dependency unit. In addition, complete daily for as many days as resources allow up to a maximum of 14 days. Continue to follow-up patients who transfer between wards. Module 3 (Outcome) complete at discharge or death General Guidance: - The CRF is designed to collect data obtained through examination, interview and review of hospital notes. Data may be collected retrospectively if the patient is enrolled after the admission date. - For more detailed guidance on how to complete these forms, please refer to the CRF Completion Guideline - Participant Identification Numbers consist of a 3 digit site code and a 4 digit participant number. You can obtain a site code and registering on the data management system by contacting ISARIC. Participant numbers should be assigned sequentially for each site beginning with 0001. In the case of a single site recruiting participants on different wards, or where it is otherwise difficult to assign sequential numbers, it is acceptable to assign numbers in blocks or incorporating alpha characters. E.g. Ward X will assign numbers from 0001 or A001 onwards and Ward Y will assign numbers from 5001 or B001 onwards. Enter the Participant Identification Number at the top of every page. - Printed paper CRFs may be used for later transfer of the data onto the electronic database. - For participants who return for re-admission to the same site, start a new form with a different Participant Identification Number. Please check “YES-admitted previously” in the ONSET & ADMISSION section. Enter as 2 separate entries in the electronic database. - For participants who transfer between two sites that are both collecting data on this form, it is preferred to have the data entered by a single site as a single admission, under the same Participant Identification Number. When this is not possible, the first site should record “Transfer to other facility” as an OUTCOME, and the second site should start a new form with a new patient number and indicate “YES-transferred” in ONSET & ADMISSION. - Complete every line of every section, except for where the instructions say to skip a section based on certain responses. - Mark ‘Not done’ for any results of laboratory values that are not available, not applicable or unknown. - Avoid recording data outside of the dedicated areas. Sections are available for recording additional information. - If using paper CRFs, we recommend writing clearly in ink, using BLOCK-CAPITAL LETTERS. - Place an (X) when you choose the corresponding answer. To make corrections, strike through (-------) the data you wish to delete and write the correct data above it. Please initial and date all corrections. - Please keep all of the sheets for a single participant together e.g. with a staple or participant-unique folder. - ISARIC would like the centers to enter data directly into their electronic data capture system. Please contact ISARIC about access. If your site would like to collect data independently, ISARIC can support you in the estabilishment of locally hosted databases. This version may serve as a basis for locally hosted databases. - Please contact ISARIC, if you need help with databases, have comments or to let ISARIC know that you are using the CRF. - Please let us know if you find any mistakes in the MDM Portal's version. FURTHER GUIDANCE AND DEFINITIONS (from the Completion guideline) Comorbidities: Comorbidities present before the onset of COVID-19 and are still present. Do not include those that developed following the onset of COVID-19 symptoms. More detailed guidance is provided. Hospital admission: For patients who were admitted to hospital with COVID-19 or symptoms consistent with possible COVID-19 infection, please enter details for the date of hospital admission. For patients with a clear alternative diagnosis leading to admission who subsequently acquired COVID-19, original admission date should be provided, but all subsequent references to admission should be taken as referring to day COVID-19 was first clinically suspected (or within the first 24 hours after first day of suspected or confirmed COVID-19 infection). Where a patient was admitted via multiple hospital departments, count admission from the time they came to the first department during the visit that led to their admission (e.g. arrival at the Emergency Department). Oxygen therapy: Include any form of supplemental oxygen received using any methods. Invasive ventilation: Please include any mechanical ventilation delivered following intubation or via a tracheostomy. Do not include patients who are breathing independently via a tracheostomy. Non-invasive ventilation: Please include any positive-pressure treatment given via a tight-fitted mask. This can be continuous positive pressure (CPAP) or bi-level positive pressure (BIPAP). Renal replacement therapy or dialysis: Please include any form of continuous renal replacement therapy or intermittent haemodialysis. Worst result: References to ‘worst result’ refer to those furthest from the normal physiological range or laboratory normal range. Results that were rejected by the clinical team (e.g. pulse oximetry on poorly perfused extremities, haemolysed blood samples, contaminated microbiology results) should not be reported. The following measures should be considered as a single observation and entered together: Blood gas results: Please report the measures from the blood gas with the lowest pH (most acidotic). Blood pressure: Please report the systolic and diastolic blood pressure from the observation with the lowest mean arterial pressure (if mean arterial pressure has not been calculated, report the measurement with lowest systolic blood pressure). Respiratory rate: If both abnormal low and high rate observed, record the abnormally high rate. General information about ISARIC ISARIC has developed a portfolio of resources to accelerate outbreak research and response. All resources are designed to address the most critical public health questions, have undergone extensive review by international clinical experts, and are free to use. ISARIC should be acknowledged and informed if you implement the protocol. Ethical apporval of the protocol and all necessary operational and financial arrangements are the responsibility of the investigators. This form refers to the CoV CASE RECORD FORM Version 1.3 25 Aug 2020. See https://isaric.tghn.org/COVID-19-CRF/

NIH Stroke Scale Routine documentation in German hospitals DMI

- 9/20/21 - 1 form, 3 itemgroups, 26 items, 2 languages
Itemgroups: General information, NIH Stroke Scale, Therapy
Routine documentation in German hospitals. Source file name: VL010107_NIH Stroke Scale. Examplary forms provided by DMI (http://www.dmi.de/)

NIH Stroke Scale Routine documentation in German hospitals DMI

- 9/20/21 - 1 form, 2 itemgroups, 20 items, 2 languages
Itemgroups: Patient, NIH Stroke Scale
Routine documentation in German hospitals. Source file name: VL010107_NIH Stroke Scale. Examplary forms provided by DMI (http://www.dmi.de/)

ICHOM Macular Degeneration

- 9/17/21 - 1 form, 10 itemgroups, 47 items, 1 language
Itemgroups: Demographics, Physical examination visual acuity, clinical status, Medical History, Therapy eye, Treatment, treatment burden, Therapy complications, Disease activity, health related quality of life Vision Screening
MACULAR DEGENERATION DATA COLLECTION Version 3.0.1 Revised: April 10th, 2017, International Consortium for Health Outcomes Measurement (ICHOM), Source: http://www.ichom.org/ Conditions: Neovascular Macular Degeneration Neovascular Age Related Macular Degeneration | Polypoidal Choroidal Vasculopathy | Myopic Neovascular Macular Degeneration | Other Forms of Neovascular Macular Degeneration (includes Post-Traumatic, Inflammatory, Idiopathic, Macular Telangiectasia Type 2) Non-Neovascular Age Related Macular Degeneration Treatment Approaches: Intravitreal anti-VEGF treatment | Other intravitreal treatment | Photodynamic therapy | Thermal laser photocoagulation | Retinal radiation therapy | Transpupillary thermotherapy | Retinal surgical treatment Questionnaires used in this form: Brief IVI

ISARIC/WHO Novel Coronavirus (nCoV) / COVID-19 Case Report Form - COVID-19 Case Report Form Rapid Critical Care Module - Part B

- 2/18/21 - 1 form, 6 itemgroups, 96 items, 1 language
Itemgroups: Participant Identification Numbers, ICU/HDU Admission Form, Reason for ICU admission, Fraility and renal failure, Daily form, Current treatment
To be completed for patients receiving critical care on whom the data below are available, together with the RAPID CRF. RAPID COVID-19 CRF users: - Sites should select whether they complete Part A only or both Parts A & B where resources allows. - In addition always complete the RAPID CRF Module 1 on day of admission to the hospital. For patients receiving critical care complete: - Part A - Complete on every day for patients receiving critical care beginning on the day of admission to an intensive care / high dependency unit, or on the first day of deterioration to severe disease in any ward where the data below is available. Complete daily for as many days as resources allow. In addition, complete the RAPID CRF Module 2 (Daily Form). - Part B - Complete Section 1 on the day of admission to an intensive care / high dependency unit. Complete Section 2 every day during critical care. In addition, complete the RAPID CRF Module 2 (Daily Form). - Complete the RAPID CRF Module 3 on death or hospital discharge for all patients.

ISARIC/WHO Novel Coronavirus (nCoV) / COVID-19 Case Report Form - COVID-19 Case Report Form Rapid Critical Care Module - Part A

- 2/18/21 - 1 form, 3 itemgroups, 34 items, 1 language
Itemgroups: Participant Identification Numbers, Current treatment, Signs and Symptoms
To be completed for patients receiving critical care on whom the data below are available, together with the RAPID CRF. RAPID COVID-19 CRF users: - Sites should select whether they complete Part A only or both Parts A & B where resources allows. - In addition always complete the RAPID CRF Module 1 on day of admission to the hospital. For patients receiving critical care complete: - PART A - Complete on every day for patients receiving critical care beginning on the day of admission to an intensive care / high dependency unit, or on the first day of deterioration to severe disease in any ward where the data below is available. Complete daily for as many days as resources allow. In addition, complete the RAPID CRF Module 2 (Daily Form). - PART B - Complete Section 1 on the day of admission to an intensive care / high dependency unit. Complete Section 2 every day during critical care. In addition, complete the RAPID CRF Module 2 (Daily Form). - Complete the RAPID CRF Module 3 on death or hospital discharge for all patients.

ISARIC/WHO Novel Coronavirus (nCoV) / COVID-19 Case Report Form - COVID-19 Case Report Form – Pregnancy Module

- 2/10/21 - 1 form, 6 itemgroups, 113 items, 1 language
Itemgroups: Participant Identification, Q1. Status on admission, Q2. Previous obstetric history, Q3. Delivery, Were any of the following samples tested?, Q4. Neonate Details (If multiple pregnancy complete Q4 for each baby)
This Case Report Form (CRF) is to be used together with the Core CRF or the RAPID CRF, to collect additional data to characterise COVID-19 infection in pregnancy. The form can be completed prospectively or retrospectively. The main or rapid COVID-19 CRF needs to be completed as well, using the same patient ID. Inclusion criteria: Pregnant woman with suspected or confirmed COVID-19. More information can be found at https://isaric.org/research/covid-19-clinical-research-resources/optional-crf-modules/

ISARIC/WHO Novel Coronavirus (nCoV) / COVID-19 Case Report Form - Module 2: Daily Case Report Form (CRF)

- 1/18/21 - 1 form, 5 itemgroups, 108 items, 1 language
Itemgroups: Administrative documentation, Signs and symptoms Part 1, Therapy, Signs and symptoms - Part 3, Laboratory Results
This CRF is set up in modules to be used for recording data on the ISARIC COVID-19 Core Database or for independent studies. Complete on the day of admission or first COVID-19 investigation, and on the first day of ICU admission (if different from day of admission). In addition, depending on available resources, complete every day for a maximum of 14 days, or for days when biochemical results are available. Module 1 and Module 2 complete on the first day of presentation/admission or on first day of COVID-19 assessment. Module 2 also complete on first day of admission to ICU or high dependency unit. In addition, complete daily for as many days as resources allow up to a maximum of 14 days. Continue to follow-up patients who transfer between wards. Module 3 (Outcome) complete at discharge or death General Guidance: - The CRF is designed to collect data obtained through examination, interview and review of hospital notes. Data may be collected retrospectively if the patient is enrolled after the admission date. - For more detailed guidance on how to complete these forms, please refer to the CRF Completion Guideline - Participant Identification Numbers consist of a 3 digit site code and a 4 digit participant number. You can obtain a site code and registering on the data management system by contacting ISARIC. Participant numbers should be assigned sequentially for each site beginning with 0001. In the case of a single site recruiting participants on different wards, or where it is otherwise difficult to assign sequential numbers, it is acceptable to assign numbers in blocks or incorporating alpha characters. E.g. Ward X will assign numbers from 0001 or A001 onwards and Ward Y will assign numbers from 5001 or B001 onwards. Enter the Participant Identification Number at the top of every page. - Printed paper CRFs may be used for later transfer of the data onto the electronic database. - For participants who return for re-admission to the same site, start a new form with a different Participant Identification Number. Please check “YES-admitted previously” in the ONSET & ADMISSION section. Enter as 2 separate entries in the electronic database. - For participants who transfer between two sites that are both collecting data on this form, it is preferred to have the data entered by a single site as a single admission, under the same Participant Identification Number. When this is not possible, the first site should record “Transfer to other facility” as an OUTCOME, and the second site should start a new form with a new patient number and indicate “YES-transferred” in ONSET & ADMISSION. - Complete every line of every section, except for where the instructions say to skip a section based on certain responses. - Mark ‘Not done’ for any results of laboratory values that are not available, not applicable or unknown. - Avoid recording data outside of the dedicated areas. Sections are available for recording additional information. - If using paper CRFs, we recommend writing clearly in ink, using BLOCK-CAPITAL LETTERS. - Place an (X) when you choose the corresponding answer. To make corrections, strike through (-------) the data you wish to delete and write the correct data above it. Please initial and date all corrections. - Please keep all of the sheets for a single participant together e.g. with a staple or participant-unique folder. - ISARIC would like the centers to enter data directly into their electronic data capture system. Please contact ISARIC about access. If your site would like to collect data independently, ISARIC can support you in the estabilishment of locally hosted databases. This version may serve as a basis for locally hosted databases. - Please contact ISARIC, if you need help with databases, have comments or to let ISARIC know that you are using the CRF. - Please let us know if you find any mistakes in the MDM Portal's version. FURTHER GUIDANCE AND DEFINITIONS (from the Completion guideline) Comorbidities: Comorbidities present before the onset of COVID-19 and are still present. Do not include those that developed following the onset of COVID-19 symptoms. More detailed guidance is provided. Hospital admission: For patients who were admitted to hospital with COVID-19 or symptoms consistent with possible COVID-19 infection, please enter details for the date of hospital admission. For patients with a clear alternative diagnosis leading to admission who subsequently acquired COVID-19, original admission date should be provided, but all subsequent references to admission should be taken as referring to day COVID-19 was first clinically suspected (or within the first 24 hours after first day of suspected or confirmed COVID-19 infection). Where a patient was admitted via multiple hospital departments, count admission from the time they came to the first department during the visit that led to their admission (e.g. arrival at the Emergency Department). Oxygen therapy: Include any form of supplemental oxygen received using any methods. Invasive ventilation: Please include any mechanical ventilation delivered following intubation or via a tracheostomy. Do not include patients who are breathing independently via a tracheostomy. Non-invasive ventilation: Please include any positive-pressure treatment given via a tight-fitted mask. This can be continuous positive pressure (CPAP) or bi-level positive pressure (BIPAP). Renal replacement therapy or dialysis: Please include any form of continuous renal replacement therapy or intermittent haemodialysis. Worst result: References to ‘worst result’ refer to those furthest from the normal physiological range or laboratory normal range. Results that were rejected by the clinical team (e.g. pulse oximetry on poorly perfused extremities, haemolysed blood samples, contaminated microbiology results) should not be reported. The following measures should be considered as a single observation and entered together: Blood gas results: Please report the measures from the blood gas with the lowest pH (most acidotic). Blood pressure: Please report the systolic and diastolic blood pressure from the observation with the lowest mean arterial pressure (if mean arterial pressure has not been calculated, report the measurement with lowest systolic blood pressure). Respiratory rate: If both abnormal low and high rate observed, record the abnormally high rate. General information about ISARIC ISARIC has developed a portfolio of resources to accelerate outbreak research and response. All resources are designed to address the most critical public health questions, have undergone extensive review by international clinical experts, and are free to use. ISARIC should be acknowledged and informed if you implement the protocol. Ethical apporval of the protocol and all necessary operational and financial arrangements are the responsibility of the investigators. This form refers to the CoV CASE RECORD FORM Version 1.3 25 Aug 2020. See https://isaric.tghn.org/COVID-19-CRF/

ISARIC/WHO Novel Coronavirus (nCoV) / COVID-19 Case Report Form - MODULE 1: PRESENTATION/ADMISSION CASE REPORT FORM

- 1/18/21 - 1 form, 10 itemgroups, 112 items, 1 language
Itemgroups: Participant Identification, Clinical Inclusion Criteria, Demographics, Post Partum, Infant, Onset and admission, Signs and symptoms at hospital admission, Admission signs and symptoms, Pre-admission medication, Co-morbidities and risk factors
This CRF is set up in modules to be used for recording data on the ISARIC COVID-19 Core Database or for independent studies. Module 1 and Module 2 complete on the first day of presentation/admission or on first day of COVID-19 assessment. Module 2 also complete on first day of admission to ICU or high dependency unit. In addition, complete daily for as many days as resources allow up to a maximum of 14 days. Continue to follow-up patients who transfer between wards. Module 3 (Outcome) complete at discharge or death GENERAL GUIDANCE - The CRF is designed to collect data obtained through examination, interview and review of hospital notes. Data may be collected retrospectively if the patient is enrolled after the admission date. - For more detailed guidance on how to complete these forms, please refer to the CRF Completion Guideline - Participant Identification Numbers consist of a 3 digit site code and a 4 digit participant number. You can obtain a site code and registering on the data management system by contacting ISARIC. Participant numbers should be assigned sequentially for each site beginning with 0001. In the case of a single site recruiting participants on different wards, or where it is otherwise difficult to assign sequential numbers, it is acceptable to assign numbers in blocks or incorporating alpha characters. E.g. Ward X will assign numbers from 0001 or A001 onwards and Ward Y will assign numbers from 5001 or B001 onwards. Enter the Participant Identification Number at the top of every page. - Printed paper CRFs may be used for later transfer of the data onto the electronic database. - For participants who return for re-admission to the same site, start a new form with a different Participant Identification Number. Please check “YES-admitted previously” in the ONSET & ADMISSION section. Enter as 2 separate entries in the electronic database. - For participants who transfer between two sites that are both collecting data on this form, it is preferred to have the data entered by a single site as a single admission, under the same Participant Identification Number. When this is not possible, the first site should record “Transfer to other facility” as an OUTCOME, and the second site should start a new form with a new patient number and indicate “YES-transferred” in ONSET & ADMISSION. - Complete every line of every section, except for where the instructions say to skip a section based on certain responses. - Mark ‘Not done’ for any results of laboratory values that are not available, not applicable or unknown. - Avoid recording data outside of the dedicated areas. Sections are available for recording additional information. - If using paper CRFs, we recommend writing clearly in ink, using BLOCK-CAPITAL LETTERS. Place an (X) when you choose the corresponding answer. To make corrections, strike through (-------) the data you wish to delete and write the correct data above it. Please initial and date all corrections. Please keep all of the sheets for a single participant together e.g. with a staple or participant-unique folder. - ISARIC would like the centers to enter data directly into their electronic data capture system. Please contact ISARIC about access. If your site would like to collect data independently, ISARIC can support you in the estabilishment of locally hosted databases. This version may serve as a basis for locally hosted databases. - Please contact ISARIC, if you need help with databases, have comments or to let ISARIC know that you are using the CRF. - Please let us know if you find any mistakes in the MDM Portal's version. FURTHER GUIDANCE AND DEFINITIONS (from the Completion guideline) Comorbidities: Comorbidities present before the onset of COVID-19 and are still present. Do not include those that developed following the onset of COVID-19 symptoms. More detailed guidance is provided. Hospital admission: For patients who were admitted to hospital with COVID-19 or symptoms consistent with possible COVID-19 infection, please enter details for the date of hospital admission. For patients with a clear alternative diagnosis leading to admission who subsequently acquired COVID-19, original admission date should be provided, but all subsequent references to admission should be taken as referring to day COVID-19 was first clinically suspected (or within the first 24 hours after first day of suspected or confirmed COVID-19 infection). Where a patient was admitted via multiple hospital departments, count admission from the time they came to the first department during the visit that led to their admission (e.g. arrival at the Emergency Department). Oxygen therapy: Include any form of supplemental oxygen received using any methods. Invasive ventilation: Please include any mechanical ventilation delivered following intubation or via a tracheostomy. Do not include patients who are breathing independently via a tracheostomy. Non-invasive ventilation: Please include any positive-pressure treatment given via a tight-fitted mask. This can be continuous positive pressure (CPAP) or bi-level positive pressure (BIPAP). Renal replacement therapy or dialysis: Please include any form of continuous renal replacement therapy or intermittent haemodialysis. Worst result: References to ‘worst result’ refer to those furthest from the normal physiological range or laboratory normal range. Results that were rejected by the clinical team (e.g. pulse oximetry on poorly perfused extremities, haemolysed blood samples, contaminated microbiology results) should not be reported. The following measures should be considered as a single observation and entered together: Blood gas results: Please report the measures from the blood gas with the lowest pH (most acidotic). Blood pressure: Please report the systolic and diastolic blood pressure from the observation with the lowest mean arterial pressure (if mean arterial pressure has not been calculated, report the measurement with lowest systolic blood pressure). Respiratory rate: If both abnormal low and high rate observed, record the abnormally high rate. General information about ISARIC ISARIC has developed a portfolio of resources to accelerate outbreak research and response. All resources are designed to address the most critical public health questions, have undergone extensive review by international clinical experts, and are free to use. ISARIC should be acknowledged and informed if you implement the protocol. Ethical apporval of the protocol and all necessary operational and financial arrangements are the responsibility of the investigators. This form refers to the CoV CASE RECORD FORM Version 1.3 25 Aug 2020. See https://isaric.tghn.org/COVID-19-CRF/

Hannover Functional Questionnaire Backache (FFbH-R)

- 1/8/21 - 1 form, 1 itemgroup, 14 items, 1 language
Itemgroup: FFbH-R
Questionnaire for the diagnosis of functional disability caused by backache. German title: Funktionsfragebogen Hannover Rücken (FFbH-R) References: Raspe, H. H., Hagedorn, U., Kohlmann, T., & Mattussek, S. (1990). Der Funktionsfragebogen Hannover (FFbH): Ein Instrument zur Funktionsdiagnostik bei polyartikulären Gelenkerkrankungen. In: J. Siegrist (Hrg.) Wohnortnahe Betreuung Rheumakranker. Ergebnisse sozialwissenschaftlicher Evaluation eines Modellversuchs (pp. 164-182). Schattauer Verlag, Stuttgart. Raspe, H. H., & Kohlmann, T. (1991). Fortschritte in der Klinischen Diagnostik und Dokumentation des chronisch-rheumatischen Schmerzes. Der Schmerz, 5, S38-S51.

ICHOM Inflammatory Bowel Disease - Outcome (Clinican reported)

- 4/30/20 - 1 form, 4 itemgroups, 30 items, 1 language
Itemgroups: Administrative Data, Disutility of care, Healthcare utilization, Survival and Disease Control
INFLAMMATORY BOWEL DISEASE COLLECTION Version 1.0.1 Revised April 10th, 2017 Based mainly on the above version, additions/modifications August 2019 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. Conditions Covered: An adult (>16) with a diagnosis of Inflammatory Bowel Disease (IBD) including Crohn’s disease, ulcerative colitis and indeterminate colitis (or IBD unclassified) Treatment Approaches: Medical | Surgical | Supportive This ODM-file contains Clinician Reported Outcome Factors. Timepoints: Baseline and Follow-up. Surveys used: IBD-Control PROM : IBD-Control is made available to the IBD community without license or fees, but the authors retain copyright and request that the original paper is cited in any published output. For more details, see: Bodger et al. Development and validation of a rapid, generic measure of disease control from the patient’s perspective: the IBD-control questionnaire. Gut 2014;63(7):1092-102. (Please note, only some questions of the IBD-Control questionnaire are asked, therefore a total score is not applicable or requested within this guide) ICHOM was supported for this standard set by Oxford Academic Health Science Network (partly funded by AbbVie). Kim AH, Roberts C, Feagan BG, et al. Developing a Standard Set of Patient-Centred Outcomes for Inflammatory Bowel Disease — an International, Cross-disciplinary Consensus. Journal of Crohn's and Colitis. 2017;1–11. doi:10.1093/ecco-jcc/jjx161 For this version of the standard set, semantic annotation with UMLS CUIs has been added.

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