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Table of contents
  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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dbGaP phs000944 eMERGE Clinical Center at Partners HealthCare - Eligibility

- 11/27/24 - 6 forms, 2 itemgroups, 11 items, 1 language
Itemgroups: IG.elig, IG.elig
Principal Investigator: Scott T. Weiss, MD, MS, Partners HealthCare System, Boston, MA, USA MeSH: Hypercholesterolemia,Asthma,Arthritis, Rheumatoid,Attention Deficit Disorder with Hyperactivity,Bipolar Disorder,Coronary Disease,Depression,Heart Failure,Inflammatory Bowel Diseases,Multiple Sclerosis,Schizophrenia,Stroke https://www.ncbi.nlm.nih.gov/projects/gap/cgi-bin/study.cgi?study_id=phs000944 The Partners HealthCare Biobank is a large research data and sample repository working within the framework of Partners Personalized Medicine. It provides researchers access to high quality, consented samples to help foster research, advance understanding of the causes of common diseases, and advance the practice of medicine. The Partners Biobank provides banked samples (plasma, serum and DNA) collected from consented patients. These samples are available for distribution to Partners HealthCare investigators with appropriate approval from the Partners Institutional Review board (IRB). They are linked to clinical data that originates in the Electronic Medical Record (EMR), as well as additional health information collected in a self-reported survey. The Partners Biobank will be genotyping 25,000 subjects with the Illumina Multiethnic Beadchip 1.6 million SNPs with exome and custom content ( 60,000 LoFs). Of the participants genotyped so far, 4929 of 4962 (99.3%) individuals have genotype data that passed the default quality thresholds for the Infinium array (call rate = 0.99). We are submitting the genotype data to dbGaP for 4929 subjects with 12 phenotypes (based on icd9 codes). We will do annual releases until we reach the full 25,000 genotyped subjects.

pht004847.v1.p1

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pht005288.v1.p1

1 itemgroup 6 items

pht004844.v1.p1

1 itemgroup 2 items

pht004845.v1.p1

1 itemgroup 3 items

pht004846.v1.p1

1 itemgroup 18 items

DELCODE: DZNE – Longitudinal Cognitive Impairment and Dementia Study - Geriatric Depression Scale (GDS), Geriatric Anxiety Inventory – Short Form (GAI‐SF) (Geriatrische Depressionsskala (GDS) und GAI-SF)

- 4/14/20 - 1 form, 3 itemgroups, 21 items, 1 language
Itemgroups: Administrative Data, Geriatric Depression Scale (GDS), Geriatric Anxiety Inventory – Short Form (GAI‐SF)
DELCODE is conducted by DZNE, the German Center for Neurodegenerative Diseases within the Helmholtz Association. The following information was taken from https://www.dzne.de/en/research/studies/clinical-studies/delcode/. Background and aims: One of the important aims of research into Alzheimer's is to find ways of detecting the disease early – if at all possible, as soon as the first minor symptoms appear, or even before any symptoms at all have appeared. Such detection capabilities are the necessary basis for development of therapies that can be applied at such early stages in the disease. Recent research indicates that such therapies could be more effective than therapies initiated during the disease's later stages. Over a period of several years, the DELCODE study is studying persons in early stages of the disease, along with various risk groups. The research is aimed at the development of procedures for characterizing early stages of the disease, at improving prediction of the course of the disease and at identifying new markers for early diagnosis of Alzheimer's-related dementia. Overview: DELCODE is set up to run for an initial period of three years, and to include a total of 1,000 study participants, who will be examined on a yearly basis. The group of participants will include persons with no complaints (healthy control subjects), patients with slight memory impairment or mild dementia and first-degree relatives of patients with diagnosed Alzheimer's disease. The minimum age for participants is 60. Course of the study: The examinations in the framework of the study will include a comprehensive interview carried out by a study investigator, a detailed neuropsychological examination (testing of memory functions and other areas of cognitive performance), a blood test and a cranial MRI scan. Optionally, subject to the study participant's consent in each case, a lumbar puncture (collection of cerebrospinal fluid) will be carried out." For more information (e.g. principle investigator and study coordination), please visit the above link or https://www.dzne.de. This document contains the Geriatric Depression Scale (GDS) and the Geriatric Anxiety Inventory – Short Form (GAI‐SF). It has to be filled in for Baseline and for all Follow-ups. For use of the questionnaire GDS no licence is required. For more information to the GDS see Yesavage JA, Brink TL, Rose TL, Lum O, Huang V, Adey M, Leirer VO. Development and validation of a geriatric depression screening scale: a preliminary report. J Psychiatr Res. 1982-83;17(1):37-49. Due to potential copyright on the questionnaire GAI-SF included in the DZNE DELCODE protocol, GAI-SF will only be included as text result item in this version of the DELCODE forms (at least until permission to publish is received from the original authors or becomes clear upon further research). The respective score items will have a comment in their descriptions about this to distinguish them from score items that were already defined like that by DZNE. For more information to GAI-SF see: Pachana, N., Byrne, G., Siddle, H., Koloski, N., Harley, E., & Arnold, E. (2007). Development and validation of the Geriatric Anxiety Inventory. International Psychogeriatrics, 19, 103-114. doi: 10.1017/S1041610206003504. Rozzini, L., Chilovi, B., Peli, M., Conti, M., Rozzini, R., Trabucchi, M., Padovani, A. (2009). Anxiety symptoms in mild cognitive impairment. International Journal of Geriatric Psychiatry, 24, 300-305. doi: 10.1002/gps.2106.

Eligibility Depression NCT00254020

- 2/28/17 - 1 form, 2 itemgroups, 12 items, 1 language
Itemgroups: Inclusion Criteria, Exclusion Criteria
The Role of Cytokine-Serotonin Interactions in Post-Stroke Depression; ODM derived from: https://clinicaltrials.gov/show/NCT00254020

Eligibility Depression NCT00082030

- 8/19/16 - 1 form, 2 itemgroups, 28 items, 1 language
Itemgroups: Criteria, Exclusion Criteria
Function of Catecholamines in the Brain During Depression; ODM derived from: https://clinicaltrials.gov/show/NCT00082030

Eligibility Depression NCT00158301

- 8/20/16 - 1 form, 2 itemgroups, 17 items, 1 language
Itemgroups: Inclusion Criteria, Exclusion Criteria
Cognitive Behavioral Therapy for Depression Relapse Prevention in Children and Adolescents; ODM derived from: https://clinicaltrials.gov/show/NCT00158301

Eligibility Depression NCT00339066

- 7/10/16 - 1 form, 2 itemgroups, 12 items, 1 language
Itemgroups: Inclusion Criteria, Exclusion Criteria
Effect of Brain Lesion Severity on Treatment Response in Late-Life Depression; ODM derived from: https://clinicaltrials.gov/show/NCT00339066

Eligibility Depression NCT00375843

- 8/9/16 - 1 form, 2 itemgroups, 17 items, 1 language
Itemgroups: Inclusion Criteria, Exclusion Criteria
Brain Activity Changes and Treatment Response in Depressed People Who Are Receiving Antidepressant Medication; ODM derived from: https://clinicaltrials.gov/show/NCT00375843

Eligibility Depression NCT00332787

- 1/12/16 - 1 form, 2 itemgroups, 16 items, 1 language
Itemgroups: Inclusion Criteria, Exclusion Criteria
Determining Optimal Continuation Treatment Duration for Depressed Children and Adolescents; ODM derived from: https://clinicaltrials.gov/show/NCT00332787

Eligibility Treatment Resistant Depression NCT00531726

- 6/11/17 - 1 form, 2 itemgroups, 14 items, 1 language
Itemgroups: Inclusion Criteria, Exclusion Criteria
Berlin Deep Brain Stimulation Depression Study; ODM derived from: https://clinicaltrials.gov/show/NCT00531726

dbGaP phs000682 Genetics of Neuropsychiatric and Neurodevelopmental Disorders - Eligibility

- 1/24/23 - 6 forms, 1 itemgroup, 15 items, 1 language
Itemgroup: IG.elig
Principal Investigator: David Goldstein, PhD, Duke University, Durham, NC, USA MeSH: Schizophrenia,Schizoaffective disorder,Attention Deficit Hyperactivity Disorder,Seizures,Oppositional defiant disorder,Anxiety,Depression,Autism,Autism Spectrum Disorders,Bipolar Disorder,Developmental Disabilities,Ataxia,Migraine,Paranoid schizophrenia,Obsessive compulsive disorder,Kluver-Bucy syndrome,Intellectual disability https://www.ncbi.nlm.nih.gov/projects/gap/cgi-bin/study.cgi?study_id=phs000682 Although schizophrenia is a highly heritable disease, relatively little progress had been made in securely identifying the genetic causes of this disorder, and most instances of schizophrenia in the general population remain unexplained. One avenue of explanation for the genetic basis of schizophrenia, however, has been effectively closed by recent research. Genome-wide association studies (GWAS) have now shown that common variation makes at most a modest contribution to the risk of schizophrenia. At the same time that the role of common variation has been circumscribed by GWAS, however, the analysis of copy number variants that are detectable on a genome-wide scale has revealed and replicated a number of very rare variants that associate with schizophrenia. These rare copy number variants that have been implicated in schizophrenia, however, have one striking feature in common: they are all risk factors for other brain related disorders beyond schizophrenia such as mental retardation, autism and epilepsy. These findings argue that genetic risk factors may confer a highly penetrant vulnerability to neuropsychiatric disorder, which is then further modified by interacting genetic or environmental factors to determine the ultimate manifestation. Most schizophrenia collections that are being studied today, however, have been selected precisely for their homogeneity: including only schizophrenia patients with no comorbidities, or schizophrenia patients with relatives who have schizophrenia but no other neuropsychiatric conditions. These selection criteria are inconsistent with what we now know about the bulk of the genetic differences that have been associated with disease. The central hypothesis of this project is that there are rare genetic variants that strongly elevate the risk of various neuropsychiatric diseases, and that these risk factors can be identified most readily in families segregating multiple neuropsychiatric conditions.

pht003594.v1.p1

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pht003595.v1.p1

1 itemgroup 6 items

pht003596.v1.p1

1 itemgroup 5 items

pht003597.v1.p1

1 itemgroup 5 items

pht003598.v1.p1

1 itemgroup 3 items

Depression - Child PhenX Toolkit

- 12/18/16 - 1 form, 1 itemgroup, 20 items, 2 languages
Itemgroup: PhenX - depression - child protocol
The Center for Epidemiological Studies Depression Scale for Children (CES-DC) is a 20 item self report instrument that measures depressive symptoms in children ages 6 through 17. 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.

Geriatric Depression Scale: PaReSiS UKH

- 11/27/16 - 1 form, 1 itemgroup, 16 items, 1 language
Itemgroup: 49. Being
Geriatric Depression Scale: PaReSiS UKH Rehabilitation Study: "Partizipatives Rehabilitationsprozessmanagement, PaReSiS Schlaganfall in Sachsen-Anhalt" Martin-Luther-Universität Halle-Wittenberg Medizinische Fakultät Institut für Gesundheits- und Pflegewissenschaft Projekt: Partizipatives Rehabilitationsprozessmanagement „Schlaganfall in Sachsen-Anhalt“ Magdeburger Straße 8 06097 Halle (Saale), Germany E-Mail: paresis@medizin.uni-halle.de

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