Suchergebnisse - Portal für Medizinische Datenmodelle (MDM-Portal)

Itemgruppen: Administrative Data, Family tree, Family history, parents, Family history, siblings, Family history, children with target diseases, Family history, other with target diseases, Family history Genetics, Frontotemporal dementia and/or amyotrophic lateral sclerosis, Family history Genetics, Familial Alzheimer type/CADASIL, Family history Genetics, Hereditary Parkinson's disease, Family history Genetics, Hereditary ataxias, Family history Genetics, Hereditary Spastic Paraparesis, Family history Genetics, Chorea-like diseases, Other diseases

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 cumulative documentation - family history. It has to be filled in at the baseline of the study.

DELCODE: DZNE – Longitudinal Cognitive Impairment and Dementia Study - Neuropsychological testing (Neuropsychologische Testung)

- 31.08.20 - 1 Formular, 17 Itemgruppen, 72 Datenelemente, 1 Sprache

Itemgruppen: Administrative Data, Neuropsychological testing, Orienting sensory evaluation, Verbal fluency, WMS‐IV - logical memory 1, Symbol Digit Modalities (SDMT), Incidental learning, WMS-R, Watch drawing, Trail Making Test, WMS‐IV - logical memory II, ADAS – Cog13, Free and Cued Selective Reminding Test with Immediate Revall (FCSRT‐IR), Face Name Test (Computer Test), Arrow test (Computertest), Multiple vocabulary intelligence test, Comments and remarks

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 Neuropsychological testing form. It has to be filled in for baseline and for all follow-ups. This form contains several questionnaires: Verbal Fluency, Wechsler Memory Scale (WMS-IV, WMS-R), Symbol Digit Modalitites, Incidental learning, Watch drawing, Trail Making Test, Alzheimer’s Disease Assessment Scale – Cognitive (ADAS-Cog13), Free and Cued Selective Reminding Test with immediate Recall (FCSRT-IR), Face Name Test, Arrow test and MWT-B. Due to potential copyright on the questionnaires ADAS-Cog13 and FCSRT-IR included in the DZNE DELCODE protocol, these quetionnaire will only be included as (sub-)scores/text result items in this version of the DELCODE forms. 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.

DELCODE: DZNE – Longitudinal Cognitive Impairment and Dementia Study - Diagnosis criteria Amyotrophic lateral sclerosis (ALS) (Diagnosekriterien Amyotrophe Lateralsklerose (ALS))

- 20.09.21 - 1 Formular, 12 Itemgruppen, 34 Datenelemente, 1 Sprache

Itemgruppen: Administrative Data, Amyotrophic lateral sclerosis (ALS), Diagnostic criteria and motor subtypes, classical ALS, ALS exclusion criteria, Diagnosis facilitation, ALS occurrence, ALS (not impaired) without cognitive impairment, ALS (cognitive impaired), ALS (behaviourally impaired), ALS (cognitively and behaviourally impaired), ALS‐FTD, ALS (without cognitive impairment, genetic risk for FTD)

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 Diagnosis criteria Amyotrophic lateral sclerosis (ALS) form. It has to be filled in if an ALS is diagnosed. Note: If there is a motor neuron disease, fill in the motor neuron disease assessment!

DELCODE: DZNE – Longitudinal Cognitive Impairment and Dementia Study - Eligibility criteria (Ein- und Ausschlusskriterien)

- 08.04.20 - 1 Formular, 3 Itemgruppen, 23 Datenelemente, 1 Sprache

Itemgruppen: Administrative Data, Inclusion criteria, Exclusion criteria

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 Eligibility criteria. It has to be filled in at the baseline of the study.

DELCODE: DZNE – Longitudinal Cognitive Impairment and Dementia Study - General aspects Baseline (Allgemein, Baseline)

- 25.03.20 - 1 Formular, 7 Itemgruppen, 40 Datenelemente, 2 Sprachen

Itemgruppen: Administrative Data, Life situation, Education and employment, Occupational status, Nicotine consumption, Alcohol consumption, Vital signs

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 General aspects Baseline form. It has to be filled in at the baseline of the study.

DELCODE: DZNE – Longitudinal Cognitive Impairment and Dementia Study - Demography (Demographie)

- 23.03.20 - 1 Formular, 4 Itemgruppen, 14 Datenelemente, 1 Sprache

Itemgruppen: Administrative Data, Demography, Ethnic group, Native language

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 Demography form. It has to be filled in at the baseline of the study.

Stichworte

Inhaltsverzeichnis

Ausgewählte Datenmodelle

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)

DELCODE: DZNE – Longitudinal Cognitive Impairment and Dementia Study - Major Depression Episode (MDE) Baseline (Major Depression Episode (MDE) Baseline)

DELCODE: DZNE – Longitudinal Cognitive Impairment and Dementia Study - Major Depression Episode (MDE) Follow-up (Major Depression Episode (MDE) Follow-up)

DELCODE: DZNE – Longitudinal Cognitive Impairment and Dementia Study - MRI - Contraindication form (MRT-Kontraindikationsbogen)

DELCODE: DZNE – Longitudinal Cognitive Impairment and Dementia Study - Magnetic resonance imaging investigation (3T‐MRT‐Untersuchung)

DESCRIBE (DZNE – Clinical Register Study of neurodegenerative Disorders) CRF MRI Contraindications - CRF MRI Contraindications

DELCODE: DZNE – Longitudinal Cognitive Impairment and Dementia Study - Kumulative Dokumentation - Familienanamnese