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Swedish MDS registry - Myelodysplastic Syndrome - Registration

- 2021-09-27 - 2 Formulär, 13 Item-grupper, 76 Dataelement, 2 Språk
Item-grupper: Registration form, Lead times, Diagnosis, Biobank, PREVIOUS DISEASE, Transfusions, Blood samples at diagnosis, Bone marrow at diagnosis, Cytogenetics at diagnosis, IPSS, Diagnosis reason, Treatment, Follow-Up
Source: Swedish National Quality Registry for Leukaemia http://www.cancercentrum.se/samverkan/cancerdiagnoser/blod-lymfom-myelom/

Myelodysplastic Syndrome - Follow-Up

10 Item-grupper 83 Dataelement

Greek MDS Registry - Registry Data

- 2021-09-27 - 1 Formulär, 8 Item-grupper, 104 Dataelement, 2 Språk
Item-grupper: Demographic data, Classification, Hematological findings, Bone marrow smear, Bone marrow biopsy, Karyotype and Prognosis, Treatment, Follow-Up – Progress
Ελληνικό Αρχείο Καταγραφής Μυελοδυσπλαστικών και Υποπλαστικών Συνδρόμων (ΕΑΚΜΥΣ) Hellenic National Registry of Myelodysplastic and Hypoplastic Syndromes Source: Prof. Dr. Argiris Symeonidis University of Patras Greece

TOPICS-MDS - TOPICS-MDS Care Receiver Baseline + Follow-up (Zorgvrager Basismeting + Vervolgmeting)

- 2021-09-27 - 1 Formulär, 12 Item-grupper, 97 Dataelement, 2 Språk
Item-grupper: Baseline / Follow-up, Administrative Data, Personal information, Living situation, Health and disease, Tasks and activities of daily life, Mouth care and complaints with mouth, jaws or temples, How you are feeling, Social activities, Quality of life, Your care use, Closure
The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS) is a public data repository which contains information on the physical and mental health and wellbeing of older persons and informal caregivers across the Netherlands. The database was developed in part to ensure uniform collection of outcomes measures, thus promoting comparability between studies. To date, 53 different research projects have contributed data to this initiative, resulting in a pooled dataset >44,000 older persons and >9,000 informal caregivers. Early 2021, the database will be updated with new data, specifically from older persons with dementia and their informal caregivers. More information can be found at https://topics-mds.eu This form contains the English and Dutch version of TOPICS-MDS 2017 questionnaire for the care receiver for the Baseline and Follow-up measurement. For follow-up, please note that for each follow-up measurement separately, all questions containing ‘12 months’ / ‘12 maanden’, the 12 needs to be replaced by the actual follow-up period. For example, when follow-up takes place after 3 months, the 12 is replaced by ‘3’. Additionally some questions are not needed for follow-up: From "Personal Information" only the marital status is needed. From "Health and Disease" the questions about the diseases are optional. They are recommended, if you want to use the frailty index. English Instructions for the participant (Dutch version below): Your experiences as a care receiver are valuable. You receive care. This list contains questions about what this care means for you as a care receiver. Your answers will be used in research to improve care for the elderly. The more information there is about care for elderly people, the more this can be taken into consideration. For example, when changing the facilities, regulations or legislation for care and wellbeing. Therefore, your experiences are also valuable for other elderly people. Instructions for this questionnaire: - Completing this questionnaire will take approximately half an hour. - Read each question through completely before selecting an answer. - If you find it difficult to understand or answer the questions, ask your partner, a family member or a friend to help you. - Some questions may appear to be ‘repeated’, but please answer all questions. They are intended to view your situation again from a different angle. - When you are done, please check that you have not forgotten any questions. Nederlandse aanwijzingen: Uw ervaringen als zorgvrager zijn waardevol. In deze lijst staan vragen over uw lichamelijke en geestelijke gezondheid, kwaliteit van leven en zorggebruik. Uw antwoorden worden gebruikt in onderzoek naar verbetering van de zorg voor ouderen. Want hoe meer er bekend is over wat ouderen zelf vinden, hoe beter er rekening mee gehouden kan worden. Bijvoorbeeld bij het veranderen van voorzieningen, regelingen of wetten voor zorg en welzijn. Uw ervaringen zijn dus waardevol, ook voor andere ouderen. Aanwijzingen bij deze vragenlijst: Het invullen van de vragenlijst kost u ongeveer een half uur. Lees elke vraag eerst helemaal door voordat u een antwoord geeft. Als u het moeilijk vindt om de vragen te begrijpen of in te vullen, vraag dan hulp aan uw partner, een familielid of vriendof vriendin. Sommige vragen lijken ‘dubbel’, maar we verzoeken u ze toch in te vullen. Ze zijn bedoeld om uw situatie nog eens van een andere kant te bekijken. Bent u klaar? Kijk dan of u geen vragen vergeten bent.

medical examination SHIP-Trend-0 blood sampling 2

- 2021-09-27 - 1 Formulär, 1 Item-grupp, 11 Dataelement, 2 Språk
Item-grupp: blood sampling 2
blood sampling 2 form of SHIP Study (Study of Health in Pomerania), conducted by the University of Greifswald. SHIP unique domain name SHIP.SHIPTrend0.MEX.BIOMAT.BLOOD2. ODM derived from https://www.fvcm.med.uni-greifswald.de/dd_service/data_use_explore.php. Further information: http://www2.medizin.uni-greifswald.de/cm/fv/ship.html.
 Publication granted by Prof. Völzke. Reference: Völzke H, et al. Cohort profile: the study of health in Pomerania. Int J Epidemiol. 2011;40(2):294-307. PMID: 20167617

medical examination SHIP-Trend-0 blood pressure

- 2021-09-27 - 1 Formulär, 1 Item-grupp, 23 Dataelement, 2 Språk
Item-grupp: blood pressure
blood pressure form of SHIP Study (Study of Health in Pomerania), conducted by the University of Greifswald. SHIP unique domain name SHIP.SHIPTrend0.MEX.PHYSEXAM.BLOODPRE. ODM derived from https://www.fvcm.med.uni-greifswald.de/dd_service/data_use_explore.php. Further information: http://www2.medizin.uni-greifswald.de/cm/fv/ship.html.
 Publication granted by Prof. Völzke. Reference: Völzke H, et al. Cohort profile: the study of health in Pomerania. Int J Epidemiol. 2011;40(2):294-307. PMID: 20167617

Swedish Bladder Cancer Registry - Cystectomy - Follow-Up

- 2021-09-27 - 1 Formulär, 5 Item-grupper, 106 Dataelement, 2 Språk
Item-grupper: General Information, Preoperative Data, Perioperative Data, Postoperative Data, Complications and Reoperations
Swedish Bladder Cancer Registry Healthcare Quality http://www.cancercentrum.se/vast/cancerdiagnoser/urinvagar/urinblase--och-urinvagscancer/kvalitetsregister/dokument/ Cystectomy - Follow-Up

clinic internal medicine B SHIP-Trend-0 BPG: spirometry

- 2021-09-20 - 1 Formulär, 1 Item-grupp, 8 Dataelement, 2 Språk
Item-grupp: BPG: spirometry
BPG: spirometry form of SHIP Study (Study of Health in Pomerania), conducted by the University of Greifswald. SHIP unique domain name SHIP.SHIPTrend0.IMB.BPG.SPIROMET. ODM derived from https://www.fvcm.med.uni-greifswald.de/dd_service/data_use_explore.php. Further information: http://www2.medizin.uni-greifswald.de/cm/fv/ship.html.
 Publication granted by Prof. Völzke. Reference: Völzke H, et al. Cohort profile: the study of health in Pomerania. Int J Epidemiol. 2011;40(2):294-307. PMID: 20167617

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

- 2021-09-20 - 1 Formulär, 12 Item-grupper, 138 Dataelement, 1 Språk
Item-grupper: 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/

Persönliches Interview SHIP-Trend-1 Impfstatus

- 2021-09-20 - 1 Formulär, 1 Item-grupp, 18 Dataelement, 1 Språk
Item-grupp: Impfstatus
Impfstatus form of SHIP Study (Study of Health in Pomerania), conducted by the University of Greifswald. SHIP unique domain name TREND.TREND1.INT.INFEKT.INFEKT. ODM derived from https://www.fvcm.med.uni-greifswald.de/dd_service/data_use_explore.php. Further information: http://www2.medizin.uni-greifswald.de/cm/fv/ship.html.
 Publication granted by Prof. Völzke. Reference: Völzke H, et al. Cohort profile: the study of health in Pomerania. Int J Epidemiol. 2011;40(2):294-307. PMID: 20167617

operational data SHIP-Trend-1 welcome, informed, consent

- 2021-09-20 - 1 Formulär, 1 Item-grupp, 52 Dataelement, 2 Språk
Item-grupp: welcome, informed, consent
welcome, informed, consent form of SHIP Study (Study of Health in Pomerania), conducted by the University of Greifswald. SHIP unique domain name TREND.TREND1.OPD.SHIPCore.INTRO. ODM derived from https://www.fvcm.med.uni-greifswald.de/dd_service/data_use_explore.php. Further information: http://www2.medizin.uni-greifswald.de/cm/fv/ship.html.
 Publication granted by Prof. Völzke. Reference: Völzke H, et al. Cohort profile: the study of health in Pomerania. Int J Epidemiol. 2011;40(2):294-307. PMID: 20167617

Swedish Heart Failure Registry (RiksSvikt) - SHFR Hospital

- 2021-09-20 - 1 Formulär, 9 Item-grupper, 93 Dataelement, 2 Språk
Item-grupper: Demography and Lifestyle, Patient self rated symptoms, Previous diseases, Performed procedures, Diagnostics, Biometrics and physical signs, Medication treatment, Patient and relative Information, Planned Follow-Up
Swedish Heart Failure Registry (RiksSvikt/SwedeHF) Sweden has a long tradition of measuring results and performance of the given health care. In order to stimulate to achieve better results, we try to find explanations for the discrepancies between different regions/hospitals/primary care units. In recent years, quality registries have become an increasingly important source of Swedish clinical research. SwedeHF (or RiksSvikt) was created in order to give the participating units knowledge, about how they diagnosed and treated their patients. The given information obtains indications where further efforts are needed in order to give patients with heart failure an optimal management. SwedeHF is an Internet-based registry, where participating units register their heart failure patient on-line, using transferred data from standardized forms or from computerized patients records. SHFR Hospital

AKTIN: Basismodul des Notaufnahmeprotokolls - Emergency Anamnesis, Ailments, basic patient data and allergies

- 2021-09-20 - 5 Formulär, 7 Item-grupper, 45 Dataelement, 2 Språk
Item-grupper: Emergency Anamnesis, Medication Anamnesis, Prehospital emergency Medication, Medical condition leading to Emergency Room contact, Patient Basic Clinical Data, Multiple Drug Resistence, Allergies
AKTIN: Verbesserung der Versorgungsforschung in der Akutmedizin in Deutschland durch den Aufbau eines Nationalen Notaufnahmeregisters (Establishment of a German Registry for Emergency Room Care) This study is the Basic module of the Emergency Room protocol used for the AKTIN project (Version v2015.2-b from 2018-03-23). https://aktin.org/ ODM derived from http://art-decor.org/decor/services/RetrieveTransaction?language=de-DE&version=2018-03-23T20%3A16%3A38&hidecolumns=45ghi&id=2.16.840.1.113883.2.6.60.3.1.3&effectiveDate=2015-11-01T00%3A00%3A00&format=html

Patient information

4 Item-grupper 17 Dataelement

Diagnoses, Therapy, additional Information

12 Item-grupper 55 Dataelement

Diagnostics

16 Item-grupper 46 Dataelement

Vital signs and scores

6 Item-grupper 16 Dataelement

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