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Table des matières
  1. 1. Klinische studie
  2. 2. Routinedocumentatie
  3. 3. Register-/kohortstudies
  4. 4. Kwaliteitswaarborging
  5. 5. Datastandaard
  6. 6. Patiëntenvragenlijst
  7. 7. Medisch vakgebied
    1. 7.1. Anesthesie
    1. 7.2. Dermatologie
    1. 7.3. HNO
    1. 7.4. Geriatrie
    1. 7.5. Gynaecologie/Ostetrie
    1. 7.6. Interne geneeskunde
      1. Hematologie
      1. Epidemiologie
      1. Cardiologie/Angiologie
      1. Pneumologie
      1. Gastro-enterologie
      1. Nefrologie
      1. Endocrinologie/Metabolisme
      1. Rheumatologie
    1. 7.7. Neurologie
    1. 7.8. Oogheelkunde
    1. 7.9. Palliatieve zorg
    1. 7.10. Pathologie/Forensische Geneeskunde
    1. 7.11. Kindergeneeskunde
    1. 7.12. Psychiatrie/Psychosomatisch
    1. 7.13. Radiologie
    1. 7.14. Chirurgie
      1. Algemene/maag-darm-chirurgie
      1. Neurochirurgie
      1. Plastische chirurgie
      1. Cardiothoracale chirurgie
      1. Traumachirurgie/Orthopedie
      1. Vaatchirurgie
    1. 7.15. Urologie
    1. 7.16. Tandheelkunde/MKG
Modèles de données sélectionnés

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21 Résultats de recherche.
Pertinence Commentaire Plus récent Moins récent

NINDS CDE Magnetic Resonance Imaging Amyotrophic Lateral Sclerosis - Magnetic Resonance Imaging

- 14-04-16 - 1 Formulaire, 5 Groupes Item, 319 Eléments de données, 1 Langue
Groupes Item: Brain Perfusion Magnetic Resonance Imaging, Diffusion Tensor Imaging, Functional Magnetic Resonance Imaging, Magnetic Resonance Imaging, Magnetic Resonance Spectroscopy
NINDS Common Data Elements (Magnetic Resonance Imaging Amyotrophic Lateral Sclerosis) 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.

Eligibility Neurologic Disorders NCT02504840

- 22-05-19 - 1 Formulaire, 2 Groupes Item, 11 Eléments de données, 1 Langue
Groupes Item: Criteria, Exclusion Criteria
Natural History of Multiple Sclerosis and Its Mimickers; ODM derived from: https://clinicaltrials.gov/show/NCT02504840

dbGaP phs000495 The Gene Partnership (TGP) - eMERGE Data - Eligibility

- 13-12-22 - 5 Formulaires, 1 Groupe Item, 7 Eléments de données, 1 Langue
Groupe Item: IG.elig
Principal Investigator: Isaac S. Kohane, MD, PhD, Boston Children's Hospital, Boston, MA, USA MeSH: Autistic Disorder,Heart Defects, Congenital,Asthma,Attention Deficit Disorders,Diabetes Mellitus, Type 1,Diabetes Mellitus, Type 2,Epilepsy,Gastrointestinal Diseases,Hypersensitivity,Autoimmune Diseases,Hematologic Diseases,Neoplasms,Arrhythmias, Cardiac,Chromosome Aberrations,Congenital Abnormalities,Dermatology,Developmental Disabilities,Endocrine System,Otolaryngology,Syndrome,Urogenital System,Hearing Loss,Immune System Diseases,Musculoskeletal Abnormalities,Nervous System Diseases,Neuromuscular Diseases,Metabolic Diseases,Nutrition Disorders,Vision Disorders,Mouth Diseases,Mental Disorders,Kidney Diseases,Respiration Disorders,Thyroid Diseases,Vascular Diseases https://www.ncbi.nlm.nih.gov/projects/gap/cgi-bin/study.cgi?study_id=phs000495 The Gene Partnership (TGP) is a prospective longitudinal registry at Boston Children's Hospital (BCH) to study the genetic and environmental contributions to childhood health and disease, collect genetic information on a large number of children who have been phenotyped, and implement the Informed Cohort and the Informed Cohort Oversight Board (ICOB). The term "*The Gene Partnership*" reflects a partnership between researchers and participants. Children seen at BCH are offered enrollment, as are their parents and siblings. DNA is collected on all enrollees. BCH has a comprehensive EMR system, and virtually all inpatient and outpatient data are captured electronically. Clinical data in the BCH EMR is loaded in the i2b2 data warehouse which is available to investigators. Cases, phenotypes, and covariates are ascertained using the i2b2 database. Participants at BCH in TGP have consented to receive any research result and/or incidental finding that arises from studies using TGP that is approved by the Informed Cohort Oversight Board (ICOB) and is in accordance with the participants' preferences; results are returned through the Personally Controlled Health Record (PCHR). BCH and Cincinnati Children's Hospital Medical Center (CCHMC) have partnered as the *P*ediatric *A*lliance for *G*enomic and *E*lectronic Medical Record (EMR) *R*esearch (*PAGER*) site for the eMERGE Phase II network for pediatric institutions, and the cohort for eMERGE at BCH is TGP.

pht002864.v1.p1

1 Groupe Item 4 Eléments de données

pht002865.v1.p1

1 Groupe Item 5 Eléments de données

pht002866.v1.p1

1 Groupe Item 42 Eléments de données

pht002867.v1.p1

1 Groupe Item 4 Eléments de données

dbGaP phs001089 HudsonAlpha Institute for Biotechnology Clinical Sequencing Exploratory Research (CSER): Genomic Diagnosis in Children with Developmental Delay - Eligibility

- 11-11-24 - 6 Formulaires, 2 Groupes Item, 10 Eléments de données, 1 Langue
Groupes Item: IG.0, IG.6
Principal Investigator: Richard M. Myers, PhD, HudsonAlpha Institute for Biotechnology, Huntsville, AL, USA MeSH: Intellectual disability,Ataxia,Autism Spectrum Disorder,Autoimmune Diseases,Congenital Abnormalities,Craniofacial Abnormalities,Epilepsy,Eye Abnormalities,Failure to Thrive,Gastrointestinal Diseases,Growth Disorders,Heart Defects, Congenital,Megalencephaly,Microcephaly,Muscular Diseases,Nervous System Disease,Problem Behavior,Seizures,Stereotypic Movement Disorder https://www.ncbi.nlm.nih.gov/projects/gap/cgi-bin/study.cgi?study_id=phs001089 The overarching goal of this project is to explore the ability for whole exome and genome sequencing technologies to identify the genetic causes of unexplained developmental delay, intellectual disability (DD/ID), and related congenital anomalies in children. Such information may be useful as an endpoint to the otherwise fruitless "diagnostic odyssey" that many DD/ID affected families undergo and in some cases, identification of these genetic variants may point to better therapeutic or educational options by precisely defining the root cause(s) of the child's condition. We seek to identify causal, diagnostically relevant, genetic variants in children with developmental delay and/or intellectual disability (DD/ID). In addition, because our analytical approach includes sequencing probands and their parents (parent-offspring trios and duos; parents are sequenced when available), secondary findings will be returned to adults (parents) at their request. The aims of this research project include: 1) Use exome and whole genome sequencing to identify genetic variation that results in DD/ID. 2) Return primary genetic results (DD/ID causative) as well as secondary findings to probands and their parents, respectively. 3) Understand how the return of genomic test results affects the health and well-being of study participants. The children participating in this study are patients at, or referrals to, North Alabama Children's Specialist (NACS) in Huntsville, Alabama. All blood samples from probands and their parents will be collected at NACS (project 1). Sequencing will be completed at the HudsonAlpha Institute for Biotechnology, with validation (via Sanger sequencing) conducted at Emory University for all returned variants (project 2). The University of Louisville will oversee questionnaires, surveys and interviews aimed at understanding study participants' perception of, and response to, genetic test results, in addition to assessment of secondary findings preferences (project 3). A subset of variants, largely those determined to be diagnostic or variants of uncertain significance for study participants at the time of disclosure, have been submitted to ClinVar. These variants are listed as part of the "CSER-HudsonAlpha" study within the database.

pht005484.v4.p1

1 Groupe Item 6 Eléments de données

pht005487.v4.p1

1 Groupe Item 4 Eléments de données

pht005483.v4.p1

1 Groupe Item 3 Eléments de données

pht005486.v4.p1

1 Groupe Item 29 Eléments de données

pht005485.v4.p1

1 Groupe Item 2 Eléments de données

Nerventra Study Unscheduled Visit

- 08-06-16 - 1 Formulaire, 4 Groupes Item, 38 Eléments de données, 1 Langue
Groupes Item: Demographic Information, Reason for unscheduled visit, Safety measurements, Exacerbation
Nerventra Study (Eudra CT 2007-003226-19) Study MS-LAQ-301: A multinational, multicenter, randomized, double-blind, parallel-group, placebo-controlled study, to evaluate the safety, tolerability and efficacy of daily oral administration of laquinimod 0.6 mg in subjects with relapsing remitting multiple sclerosis (RRMS)

Nerventra Study Liver enzyme evaluation

- 08-06-16 - 1 Formulaire, 2 Groupes Item, 34 Eléments de données, 1 Langue
Groupes Item: Demographic Information, Evaluation of liver enzymes
Nerventra Study (Eudra CT 2007-003226-19) Study MS-LAQ-301: A multinational, multicenter, randomized, double-blind, parallel-group, placebo-controlled study, to evaluate the safety, tolerability and efficacy of daily oral administration of laquinimod 0.6 mg in subjects with relapsing remitting multiple sclerosis (RRMS)

Nerventra Study Laboratory data

- 08-06-16 - 1 Formulaire, 2 Groupes Item, 12 Eléments de données, 1 Langue
Groupes Item: Demographic Information, Laboratory parameter
Nerventra Study (Eudra CT 2007-003226-19) Study MS-LAQ-301: A multinational, multicenter, randomized, double-blind, parallel-group, placebo-controlled study, to evaluate the safety, tolerability and efficacy of daily oral administration of laquinimod 0.6 mg in subjects with relapsing remitting multiple sclerosis (RRMS)

Nerventra Study Study drug dispensing and return

- 08-06-16 - 1 Formulaire, 3 Groupes Item, 22 Eléments de données, 1 Langue
Groupes Item: Demographic Information, Drug dispensed, Drug dispensing and return
Nerventra Study (Eudra CT 2007-003226-19) Study MS-LAQ-301: A multinational, multicenter, randomized, double-blind, parallel-group, placebo-controlled study, to evaluate the safety, tolerability and efficacy of daily oral administration of laquinimod 0.6 mg in subjects with relapsing remitting multiple sclerosis (RRMS)

Nerventra Study Adverse event log

- 08-06-16 - 1 Formulaire, 4 Groupes Item, 38 Eléments de données, 1 Langue
Groupes Item: Demographic Information, Ongoing adverse events, Adverse events log Baseline, Adverse events Visit 1
Nerventra Study (Eudra CT 2007-003226-19) Study MS-LAQ-301: A multinational, multicenter, randomized, double-blind, parallel-group, placebo-controlled study, to evaluate the safety, tolerability and efficacy of daily oral administration of laquinimod 0.6 mg in subjects with relapsing remitting multiple sclerosis (RRMS)

Nerventra Study Medication log

- 08-06-16 - 1 Formulaire, 3 Groupes Item, 19 Eléments de données, 1 Langue
Groupes Item: Demographic Information, Medication log, Concomitant medications log
Nerventra Study (Eudra CT 2007-003226-19) Study MS-LAQ-301: A multinational, multicenter, randomized, double-blind, parallel-group, placebo-controlled study, to evaluate the safety, tolerability and efficacy of daily oral administration of laquinimod 0.6 mg in subjects with relapsing remitting multiple sclerosis (RRMS)

Nerventra Study Sustained increase in EDSS

- 08-06-16 - 1 Formulaire, 2 Groupes Item, 10 Eléments de données, 1 Langue
Groupes Item: Demographic Information, Sustained increase in EDSS
Nerventra Study (Eudra CT 2007-003226-19) Study MS-LAQ-301: A multinational, multicenter, randomized, double-blind, parallel-group, placebo-controlled study, to evaluate the safety, tolerability and efficacy of daily oral administration of laquinimod 0.6 mg in subjects with relapsing remitting multiple sclerosis (RRMS)

Nerventra Study Termination/Early termination

- 08-06-16 - 1 Formulaire, 2 Groupes Item, 12 Eléments de données, 1 Langue
Groupes Item: Demographic Information, Termination/Early termination
Nerventra Study (Eudra CT 2007-003226-19) Study MS-LAQ-301: A multinational, multicenter, randomized, double-blind, parallel-group, placebo-controlled study, to evaluate the safety, tolerability and efficacy of daily oral administration of laquinimod 0.6 mg in subjects with relapsing remitting multiple sclerosis (RRMS)

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