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  1. 1. Clinical Trial
  2. 2. Routine Documentation
  3. 3. Registry/Cohort Study
  4. 4. Quality Assurance
  5. 5. Data Standard
  6. 6. Patient-Reported Outcome
  7. 7. Medical Specialty
    1. 7.1. Anesthesiology
    1. 7.2. Dermatology
    1. 7.3. ENT
    1. 7.4. Geriatrics
    1. 7.5. Gynecology/Obstetrics
    1. 7.6. Internal Medicine
      1. Hematology
      1. Infectious Diseases
      1. Cardiology/Angiology
      1. Pneumology
      1. Gastroenterology
      1. Nephrology
      1. Endocrinology/Metabolic Diseases
      1. Rheumatology
    1. 7.7. Neurology
    1. 7.8. Ophthalmology
    1. 7.9. Palliative Care
    1. 7.10. Pathology/Forensics
    1. 7.11. Pediatrics
    1. 7.12. Psychiatry/Psychosomatics
    1. 7.13. Radiology
    1. 7.14. Surgery
      1. General/Visceral Surgery
      1. Neurosurgery
      1. Plastic Surgery
      1. Thoracic Surgery
      1. Trauma/Orthopedics
      1. Vascular Surgery
    1. 7.15. Urology
    1. 7.16. Dental Medicine/OMS
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MARS - Muenster Aging and Retina study Age-related macular degeneration - B. Eye diseases

- 9/20/21 - 17 forms, 1 itemgroup, 83 items, 1 language
Itemgroup: Eye disease
Age-related macular degeneration (AMD) is a retinal degenerative disease that occurs at an advanced age and is the major cause of central visual acuity loss and old-age blindness in its final stages. The aim of the MARS study is to identify factors that influence the progression and course of age-related macular degeneration in a prospective study. To date, the following studies have been carried out on the MARS cohort: MARS-I: 2001-2003; MARS-II: 2004 - 2007; MARS-III: 2007-2009; MARS +: 2010/11. The study is provided by Prof. Dr. Hense, Institute of Epidemiology and Social medicine, University Clinic of Muenster.

Administrative documentation

1 itemgroup 16 items

A. Self-assessment of visual acuity

1 itemgroup 9 items

Interview

1 itemgroup 5 items

D. Slit lamp biomicroscopy I

1 itemgroup 18 items

H.Quality of Life

1 itemgroup 24 items

I. Family History

1 itemgroup 21 items

dgGaP phs000001.v3.p1 NEI Age-Related Eye Disease Study (AREDS) - pht000370.v2.p1

- 10/12/22 - 19 forms, 1 itemgroup, 12 items, 1 language
Itemgroup: pht000370.v2.p1
https://www.ncbi.nlm.nih.gov/projects/gap/cgi-bin/study.cgi?study_id=phs000001.v3.p1 The Age-Related Eye Disease Study (AREDS) was initially designed as a long-term multi-center, prospective study of the clinical course of age-related macular degeneration (AMD) and age-related cataract. In addition to collecting natural history data, AREDS included a clinical trial of high-dose vitamin and mineral supplements for AMD and a clinical trial of high-dose vitamin supplements for cataract. AREDS participants were 55 to 80 years of age at enrollment and had to be free of any illness or condition that would make long-term follow-up or compliance with study medications unlikely or difficult. On the basis of fundus photographs graded by a central reading center, best-corrected visual acuity and ophthalmologic evaluations, 4,757 participants were enrolled in one of several AMD categories, including persons with no AMD. The clinical trials for AMD and cataract were conducted concurrently. AREDS participants were followed on the clinical trials for a median time of 6.5 years. Subsequent to the conclusion of the clinical trials, participants were followed for an additional 5 years and natural history data were collected. The AREDS research design is detailed in AREDS Report 1. AREDS Report 8 contains the mainline results from the AMD trial; AREDS Report 9 contains the results of the cataract trial. Blood samples were also collected from 3,700+ AREDS participants for genetic research. Genetic samples from 600 AREDS participants (200 controls, 200 Neovascular AMD cases, and 200 Geographic Atrophy cases) were selected using data available in March 2005 and then were evaluated with a genome-wide scan. These data, as well as selected phenotypic data, were made available in the dbGaP. DNA from AREDS participants, which is currently being stored in the AREDS Genetic Repository, is available for research purposes. However, not all of the 3,700+ AREDS participants who submitted a blood sample currently have DNA available. In addition to including the data from the genome-wide scan on the 600 original samples, this second version of the AREDS dbGaP database provides a comprehensive set of data tables with extensive clinical information collected for the 4,757 participants who participated in AREDS. The tables include information collected at enrollment/baseline, during study follow-up, fundus and lens pathology, nutritional estimates, quality of life measures and measures of morbidity and mortality. In November 2010, over 72,000 high quality fundus and lens photographs from 595 AREDS participants (of the original 600 selected for the genome-wide scan) were made available in the AREDS dbGaP. In addition to the genome-wide scan data, the fundus and lens grading data for these participants are also available in the AREDS dbGaP. Details about the ocular photographs that are available are found here. In January 2012, a measure of daily sunlight exposure was added in a separate "sunlight" table. Furthermore, the "followup" table has been revised. The visual acuity for the right eye was inadvertently missing at odd-numbered visits (01, 03, 05, etc.). This data is now part of the table. It is hoped that this resource will better help researchers understand two important diseases that affect an aging population. These data may be applied to examination and inference on genetic and genetic-environmental bases for age-related diseases of public health significance and may also help elucidate the clinical course of both conditions, generate hypotheses, and aid in the design of clinical trials of preventive interventions. *Definitions of Final AMD Phenotype Categories* Please see phd001138.1 for a detailed description of how AREDS participants' final AMD phenotype was categorized. *User's Guide for AREDS Phenotype Data* A detailed User's Guide for the AREDS phenotype data is available. This *User's Guide* is meant to be a comprehensive document which explains the complexities of the AREDS data. *It is recommended that all researchers using AREDS phenotype data make use of this User's Guide*.

pht000371.v2.p1

1 itemgroup 25 items

pht000001.v2.p1

1 itemgroup 142 items

pht000372.v2.p1

1 itemgroup 56 items

pht000379.v2.p1

1 itemgroup 21 items

pht000380.v2.p1

1 itemgroup 7 items

pht000381.v2.p1

1 itemgroup 44 items

44965_dbGaP phs000001 NEI Age-Related Eye Disease Study (AREDS) - pht000378.v2.p1

- 10/12/22 - 19 forms, 1 itemgroup, 6 items, 1 language
Itemgroup: pht000378
Principal Investigator: Susan B. Bressler, MD, Wilmer Eye Institute, The Johns Hopkins Medical Institutions, Baltimore, MD MeSH: Macular Degeneration,Cataract https://www.ncbi.nlm.nih.gov/projects/gap/cgi-bin/study.cgi?study_id=phs000001 The Age-Related Eye Disease Study (AREDS) was initially designed as a long-term multi-center, prospective study of the clinical course of age-related macular degeneration (AMD) and age-related cataract. In addition to collecting natural history data, AREDS included a clinical trial of high-dose vitamin and mineral supplements for AMD and a clinical trial of high-dose vitamin supplements for cataract. AREDS participants were 55 to 80 years of age at enrollment and had to be free of any illness or condition that would make long-term follow-up or compliance with study medications unlikely or difficult. On the basis of fundus photographs graded by a central reading center, best-corrected visual acuity and ophthalmologic evaluations, 4,757 participants were enrolled in one of several AMD categories, including persons with no AMD. The clinical trials for AMD and cataract were conducted concurrently. AREDS participants were followed on the clinical trials for a median time of 6.5 years. Subsequent to the conclusion of the clinical trials, participants were followed for an additional 5 years and natural history data were collected. The AREDS research design is detailed in AREDS Report 1. AREDS Report 8 contains the mainline results from the AMD trial; AREDS Report 9 contains the results of the cataract trial. Blood samples were also collected from 3,700+ AREDS participants for genetic research. Genetic samples from 600 AREDS participants (200 controls, 200 Neovascular AMD cases, and 200 Geographic Atrophy cases) were selected using data available in March 2005 and then were evaluated with a genome-wide scan. These data, as well as selected phenotypic data, were made available in the dbGaP. DNA from AREDS participants, which is currently being stored in the AREDS Genetic Repository, is available for research purposes. However, not all of the 3,700+ AREDS participants who submitted a blood sample currently have DNA available. In addition to including the data from the genome-wide scan on the 600 original samples, this second version of the AREDS dbGaP database provides a comprehensive set of data tables with extensive clinical information collected for the 4,757 participants who participated in AREDS. The tables include information collected at enrollment/baseline, during study follow-up, fundus and lens pathology, nutritional estimates, quality of life measures and measures of morbidity and mortality. In November 2010, over 72,000 high quality fundus and lens photographs from 595 AREDS participants (of the original 600 selected for the genome-wide scan) were made available in the AREDS dbGaP. In addition to the genome-wide scan data, the fundus and lens grading data for these participants are also available in the AREDS dbGaP. Details about the ocular photographs that are available are found here. In January 2012, a measure of daily sunlight exposure was added in a separate "sunlight" table. Furthermore, the "followup" table has been revised. The visual acuity for the right eye was inadvertently missing at odd-numbered visits (01, 03, 05, etc.). This data is now part of the table. It is hoped that this resource will better help researchers understand two important diseases that affect an aging population. These data may be applied to examination and inference on genetic and genetic-environmental bases for age-related diseases of public health significance and may also help elucidate the clinical course of both conditions, generate hypotheses, and aid in the design of clinical trials of preventive interventions. *Definitions of Final AMD Phenotype Categories* Please see phd001138.1 for a detailed description of how AREDS participants' final AMD phenotype was categorized. *User's Guide for AREDS Phenotype Data* A detailed User's Guide for the AREDS phenotype data is available. This *User's Guide* is meant to be a comprehensive document which explains the complexities of the AREDS data. *It is recommended that all researchers using AREDS phenotype data make use of this User's Guide*.

pht000379.v2.p1

1 itemgroup 21 items

pht000380.v2.p1

1 itemgroup 7 items

pht000381.v2.p1

1 itemgroup 44 items

pht000382.v2.p1

1 itemgroup 16 items

pht002478.v1.p1

1 itemgroup 6 items

pht002477.v1.p1

1 itemgroup 2 items

Age Related Macular Degeneration Registry National Eye Database (NED) - Age Related Macular Degeneration Registry

- 9/20/21 - 1 form, 9 itemgroups, 86 items, 1 language
Itemgroups: Administrative Data, Demography, Risk Factors, Quality of Life, Medical History, Clinical features, Investigation, Diagnosis, Therapy
Age Related Macular Degeneration Registry. The National Eye Database (NED) is a service supported by the Ministry of Health (MOH) as an approach to collect health information. It collects data on incidences and distributions, and evaluates risk factors as well as treatment outcome of visually threatening eye diseases such as cataract, diabetic retinopathy, glaucoma and contact lens related corneal ulcer. National Eye Database, Clinical Research Centre, Kepong-Selayang Highway 68100, Batu Caves Selangor. http://www.acrm.org.my/ned/index.htm.

Vision Testing (Eye) Pazopanib Macular Degeneration MD1103367 - Vision Testing (Eye)

- 6/10/18 - 1 form, 6 itemgroups, 22 items, 1 language
Itemgroups: Subjective Refraction Right Eye, Subjective Refraction Left Eye, Visual Acuity, lntraocular Pressure, Slip Lamp Examination, Fundus Examination
Study part: Vision Testing (Eye). A phase 1 single-masked, randomized (with respect to placebo), placebo-controlled, parallel-group, dose-rising study to evaluate the safety, tolerability and pharmacokinetics of repeat oral doses of GW786034 in elderly healthy volunteers. Trade Name: Votrient. Clinical Study ID: MD1103367.

Common Data Elements for Retinal Neovascular Diseases - Eye Examination

- 9/20/21 - 4 forms, 1 itemgroup, 18 items, 2 languages
Itemgroup: Eye Examination
Common Data Elements for retinal neovascular diseases. The CDEs may be used in clinical routine, clinical trial, patient outcome, quality assurance and registry documentation of Age related macular degeneration (AMD), Diabetic Retinopathy (DR) and Retinal vein occlusion (RVO). The CDEs were developed by the Institute of Medical Informatics of the University Muenster in cooperation with the Department of Ophthalmology of the University Hospital Muenster.

Risk Factors or Past Medical History

1 itemgroup 35 items

Diagnosis and Examination

1 itemgroup 11 items

Therapy

1 itemgroup 9 items

ICHOM Macular Degeneration - Each Clinical Visit - Clinical Form

- 4/30/20 - 1 form, 8 itemgroups, 35 items, 1 language
Itemgroups: Administrative Data, Clinical status, Other ocular treatments, Treatment variables, Burden of treatment, Complications of treatment, Disease activity, Visual functioning and health related quality of life
ICHOM Macular Degeneration data collection Version 3.0.1 Revised: April 10th, 2017 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 Macular Degeneration, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. 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 This document contains the Each Clinical Visit - Clinical Form. Collecting Patient-Reported Outcome Measure: Brief Impact of Vision Impairment Questionnaire (Brief IVI): The Brief IVI includes costs for commercial use, and requires an agreement license. Therefore this questionnaire is not included in this Version of the standard set. Reference: Rodrigues IA, Sprinkhuizen SM, Barthelmes D, et al. Defining a Minimum Set of Standardized Patient-centered Outcome Measures for Macular Degeneration. American Journal of Opthalmology. 2016;168:1–12. doi: 10.1016/j.ajo.2016.04.012 The Standard set of ICHOM was supported by the WillsEye Hospital (America’s First World’s Best), Retina Suisse, St. Erik Eye Hospital, Macular Society, The Retina Society, Save sight Institute and The Macula Foundation (Preserving and Restoring Vision). For this version of the standard set, semantic annotation with UMLS CUIs has been added.

Pazopanib Eye Drops versus Ranibizumab Intravitreal Injections for the Treatment of Neovascular Age-Related Macular Degeneration NCT01134055 - Screen - ETDRS Refraction; ETDRS Visual Acuity; Intraocular Pressure Exam; External Ocular Exam; Pupil Exam; Motility Exam; Confrontation Visual Field

- 1/20/20 - 1 form, 8 itemgroups, 35 items, 1 language
Itemgroups: ETDRS Refraction, ETDRS Visual Acuity, Intraocular Pressure Exam, External Ocular Exam, Pupil Exam - Right Eye, Pupil Exam - Left Eye , Motility Exam, Confrontation Visual Field
Study ID: 110852 Clinical Study ID: 110852 Study Title: MD7110852, A Phase 2b Dose-Ranging Study of Pazopanib Eye Drops versus Ranibizumab Intravitreal Injections for the Treatment of Neovascular Age-Related Macular Degeneration Patient Level Data: Study Listed on ClinicalStudyDataRequest.com Clinicaltrials.gov Identifier: NCT01134055 Sponsor: GlaxoSmithKline Phase: Phase 2 Study Recruitment Status: Completed Generic Name: pazopanib eye drops, ranibizumab intravitreal injection, placebo Trade Name: pazopanib, ranibizumab Study Indication: Macular Degeneration

ICHOM Macular Degeneration - Annually - Clinical Form

- 4/30/20 - 1 form, 2 itemgroups, 8 items, 1 language
Itemgroups: Administrative Data, Medical History
ICHOM Macular Degeneration data collection Version 3.0.1 Revised: April 10th, 2017 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 Macular Degeneration, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. 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 This document contains the Annually - Clinical Form. It has to be filled in annually from baseline. Collecting Patient-Reported Outcome Measure: Brief Impact of Vision Impairment Questionnaire (Brief IVI): The Brief IVI includes costs for commercial use, and requires an agreement license. Therefore this questionnaire is not included in this Version of the standard set. Reference: Rodrigues IA, Sprinkhuizen SM, Barthelmes D, et al. Defining a Minimum Set of Standardized Patient-centered Outcome Measures for Macular Degeneration. American Journal of Opthalmology. 2016;168:1–12. doi: 10.1016/j.ajo.2016.04.012 The Standard set of ICHOM was supported by the WillsEye Hospital (America’s First World’s Best), Retina Suisse, St. Erik Eye Hospital, Macular Society, The Retina Society, Save sight Institute and The Macula Foundation (Preserving and Restoring Vision). For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Macular Degeneration - Baseline - Patient-reported

- 4/30/20 - 1 form, 3 itemgroups, 4 items, 1 language
Itemgroups: Administrative Data, Demographics, Visual functioning and health related quality of life
ICHOM Macular Degeneration data collection Version 3.0.1 Revised: April 10th, 2017 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 Macular Degeneration, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. 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 This document contains the Baseline - Patient-reported form. It has to be filled in at Patient's entrance into outcome tracking system for Macular Degeneration. Collecting Patient-Reported Outcome Measure: Brief Impact of Vision Impairment Questionnaire (Brief IVI): The Brief IVI includes costs for commercial use, and requires an agreement license. Therefore this questionnaire is not included in this Version of the standard set. Reference: Rodrigues IA, Sprinkhuizen SM, Barthelmes D, et al. Defining a Minimum Set of Standardized Patient-centered Outcome Measures for Macular Degeneration. American Journal of Opthalmology. 2016;168:1–12. doi: 10.1016/j.ajo.2016.04.012 The Standard set of ICHOM was supported by the WillsEye Hospital (America’s First World’s Best), Retina Suisse, St. Erik Eye Hospital, Macular Society, The Retina Society, Save sight Institute and The Macula Foundation (Preserving and Restoring Vision). For this version of the standard set, semantic annotation with UMLS CUIs has been added.

Example 2 Discharge Letter AMD

- 9/17/21 - 1 form, 14 itemgroups, 46 items, 1 language
Itemgroups: Administrative data, Diagnosis Right eye, Diagnosis Left eye, Vision, Intraocular pressure, Slit lamp biomicroscopy Right eye, Slit lamp biomicroscopy Left eye, Ophthalmoscopy Right eye, Ophthalmoscopy Left eye, OCT Macula Right eye, OCT Macula Left eye, Fluorescein Angiography, Indocyanine green angiography, Evaluation; Treatment
Routine documentation for Age-Related Macular Degeneration. Eye clinic, University Clinic of Muenster.

Example 1 Discharge Letter AMD

- 2/5/18 - 1 form, 15 itemgroups, 50 items, 1 language
Itemgroups: Administrative data, Diagnosis Right eye, Diagnosis Left eye, Vision, Intraocular pressure, Slit lamp biomicroscopy Right eye, Slit lamp biomicroscopy Left eye, Ophthalmoscopy Right eye, Ophthalmoscopy Left eye, SD- OCT Right eye, SD- OCT Left eye, Autofluorescence, Fluorescein Angiography, Indocyanine green angiography, Evaluation; Treatment
Routine documentation for Age-Related Macular Degeneration. Eye clinic, University Clinic of Muenster.

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