| Demographic Data |
| Relation to Proband |
No Data |
| Age at Sampling |
50 YR |
| Gender |
Male |
| Age of Onset(If not a control) |
49 YR |
| Age at Diagnosis(If not a control) |
50 YR |
| Hispanic or Latino/Not Hispanic or Latino |
Not Hispanic/Latino |
| Racial Category |
White |
| Country |
USA |
| Diagnosed By |
No Data |
| |
| Data Elements |
| Clinical Element Type: Motor Neuron Disorders |
| (Longitudinal, Series #2) |
| Longitudinal Data |
| Is this data Longitudinal (Follow-Up) Data? |
No Data |
| Family History |
| ALS/other MND |
No Data |
| Parkinson's disease |
No Data |
| Alzheimer's disease |
No Data |
| Other dementia |
No Data |
| Other neurodegenerative disease |
No Data |
| Medical History |
| Alzheimer's disease |
No Data |
| Ataxia |
No Data |
| Autism |
No Data |
| Bipolar (manic-depressive) |
No Data |
| Brain aneurysm |
No Data |
| Cancer |
No Data |
| Dementia |
Alzheimer's
Dementia
absent
|
| Depression |
No Data |
| Diabetes |
No Data |
| Dystonia |
No Data |
| Epilepsy |
No Data |
| Heart disease |
No Data |
| Hypertension |
No Data |
| Multiple sclerosis |
No Data |
| Muscle disease |
No Data |
| Parkinson's |
No Data |
| Schizophrenia |
No Data |
| Suicide/Attempt |
No Data |
| Stroke |
No Data |
| Primary Clinical Diagnosis |
| Primary clinical diagnosis |
No Data |
| Secondary Neurological Diagnosis |
| Secondary neurological diagnoses |
Frontotemporal dementia
Other (specify)
Not Applicable
|
| Site of Symptom Onset |
| site of symptom onset |
No Data |
| Treatment |
| Current treatment |
Riluzole
PEG
NIPPV
Tracheotomy
Assisted Ventilation > 23 hours
Other (specify)
No Treatment
|
| Signs Supporting Diagnosis |
| Upper Motor Neuron Signs-Bulbar |
No Data |
| Upper Motor Neuron Signs-Cervical/upper limbs |
No Data |
| Upper Motor Neuron Signs-Thoracic/chest |
No Data |
| Upper Motor Neuron Signs-Lumbosacral/lower limbs |
No Data |
| Lower Motor Neuron Signs-Bulbar |
No Data |
| Lower Motor Neuron Signs-Cervical/upper limbs |
No Data |
| Lower Motor Neuron Signs-Thoracic/chest |
No Data |
| Lower Motor Neuron Signs-Lumbosacral/lower limbs |
No Data |
| EMG Studies |
| Bulbar |
No Data |
| Cervical/upper limbs |
No Data |
| Thoracic/chest |
No Data |
| Lumbosacral/lower limbs |
No Data |
| Genetics |
| SOD-1 mutation |
No Data |
| Other mutation |
No Data |
| Atypical Features of ALS/MND |
| Atypical features of ALS/MND |
sensory
autonomic
cerebellar
cognitive
Parkinsonian
sphincter
ocular
other
|
| Optional data |
| Current ALSFRS-R |
43 (7/31/06) |
| FVC |
101 (7/31/06) |
| smoking history |
No Data |
| years smoking |
No Data |
| Handedness |
No Data |
| Clinical Element Type: Motor Neuron Disorders |
| (Longitudinal, Series #3) |
| Longitudinal Data |
| Is this data Longitudinal (Follow-Up) Data? |
No Data |
| Family History |
| ALS/other MND |
No Data |
| Parkinson's disease |
No Data |
| Alzheimer's disease |
No Data |
| Other dementia |
No Data |
| Other neurodegenerative disease |
No Data |
| Medical History |
| Alzheimer's disease |
No Data |
| Ataxia |
No Data |
| Autism |
No Data |
| Bipolar (manic-depressive) |
No Data |
| Brain aneurysm |
No Data |
| Cancer |
No Data |
| Dementia |
Alzheimer's
Dementia
absent
|
| Depression |
No Data |
| Diabetes |
No Data |
| Dystonia |
No Data |
| Epilepsy |
No Data |
| Heart disease |
No Data |
| Hypertension |
No Data |
| Multiple sclerosis |
No Data |
| Muscle disease |
No Data |
| Parkinson's |
No Data |
| Schizophrenia |
No Data |
| Suicide/Attempt |
No Data |
| Stroke |
No Data |
| Primary Clinical Diagnosis |
| Primary clinical diagnosis |
No Data |
| Secondary Neurological Diagnosis |
| Secondary neurological diagnoses |
Frontotemporal dementia
Other (specify)
Not Applicable
|
| Site of Symptom Onset |
| site of symptom onset |
No Data |
| Treatment |
| Current treatment |
Riluzole
PEG
NIPPV
Tracheotomy
Assisted Ventilation > 23 hours
Other (specify)
No Treatment
|
| Signs Supporting Diagnosis |
| Upper Motor Neuron Signs-Bulbar |
No Data |
| Upper Motor Neuron Signs-Cervical/upper limbs |
No Data |
| Upper Motor Neuron Signs-Thoracic/chest |
No Data |
| Upper Motor Neuron Signs-Lumbosacral/lower limbs |
No Data |
| Lower Motor Neuron Signs-Bulbar |
No Data |
| Lower Motor Neuron Signs-Cervical/upper limbs |
No Data |
| Lower Motor Neuron Signs-Thoracic/chest |
No Data |
| Lower Motor Neuron Signs-Lumbosacral/lower limbs |
No Data |
| EMG Studies |
| Bulbar |
No Data |
| Cervical/upper limbs |
No Data |
| Thoracic/chest |
No Data |
| Lumbosacral/lower limbs |
No Data |
| Genetics |
| SOD-1 mutation |
No Data |
| Other mutation |
No Data |
| Atypical Features of ALS/MND |
| Atypical features of ALS/MND |
sensory
autonomic
cerebellar
cognitive
Parkinsonian
sphincter
ocular
other
|
| Optional data |
| Current ALSFRS-R |
No Data |
| FVC |
103 (4/12/06) |
| smoking history |
No Data |
| years smoking |
No Data |
| Handedness |
No Data |
| Clinical Element Type: Motor Neuron Disorders |
| (Longitudinal, Series #4) |
| Longitudinal Data |
| Is this data Longitudinal (Follow-Up) Data? |
No Data |
| Family History |
| ALS/other MND |
No Data |
| Parkinson's disease |
No Data |
| Alzheimer's disease |
No Data |
| Other dementia |
No Data |
| Other neurodegenerative disease |
No Data |
| Medical History |
| Alzheimer's disease |
No Data |
| Ataxia |
No Data |
| Autism |
No Data |
| Bipolar (manic-depressive) |
No Data |
| Brain aneurysm |
No Data |
| Cancer |
No Data |
| Dementia |
Alzheimer's
Dementia
absent
|
| Depression |
No Data |
| Diabetes |
No Data |
| Dystonia |
No Data |
| Epilepsy |
No Data |
| Heart disease |
No Data |
| Hypertension |
No Data |
| Multiple sclerosis |
No Data |
| Muscle disease |
No Data |
| Parkinson's |
No Data |
| Schizophrenia |
No Data |
| Suicide/Attempt |
No Data |
| Stroke |
No Data |
| Primary Clinical Diagnosis |
| Primary clinical diagnosis |
No Data |
| Secondary Neurological Diagnosis |
| Secondary neurological diagnoses |
Frontotemporal dementia
Other (specify)
Not Applicable
|
| Site of Symptom Onset |
| site of symptom onset |
No Data |
| Treatment |
| Current treatment |
Riluzole
PEG
NIPPV
Tracheotomy
Assisted Ventilation > 23 hours
Other (specify)
No Treatment
|
| Signs Supporting Diagnosis |
| Upper Motor Neuron Signs-Bulbar |
No Data |
| Upper Motor Neuron Signs-Cervical/upper limbs |
No Data |
| Upper Motor Neuron Signs-Thoracic/chest |
No Data |
| Upper Motor Neuron Signs-Lumbosacral/lower limbs |
No Data |
| Lower Motor Neuron Signs-Bulbar |
No Data |
| Lower Motor Neuron Signs-Cervical/upper limbs |
No Data |
| Lower Motor Neuron Signs-Thoracic/chest |
No Data |
| Lower Motor Neuron Signs-Lumbosacral/lower limbs |
No Data |
| EMG Studies |
| Bulbar |
No Data |
| Cervical/upper limbs |
No Data |
| Thoracic/chest |
No Data |
| Lumbosacral/lower limbs |
No Data |
| Genetics |
| SOD-1 mutation |
No Data |
| Other mutation |
No Data |
| Atypical Features of ALS/MND |
| Atypical features of ALS/MND |
sensory
autonomic
cerebellar
cognitive
Parkinsonian
sphincter
ocular
other
|
| Optional data |
| Current ALSFRS-R |
No Data |
| FVC |
127 (7/12/06) |
| smoking history |
No Data |
| years smoking |
No Data |
| Handedness |
No Data |
| Clinical Element Type: Motor Neuron Disorders |
| (Longitudinal, Series #5) |
| Longitudinal Data |
| Is this data Longitudinal (Follow-Up) Data? |
No Data |
| Family History |
| ALS/other MND |
No Data |
| Parkinson's disease |
No Data |
| Alzheimer's disease |
No Data |
| Other dementia |
No Data |
| Other neurodegenerative disease |
No Data |
| Medical History |
| Alzheimer's disease |
No Data |
| Ataxia |
No Data |
| Autism |
No Data |
| Bipolar (manic-depressive) |
No Data |
| Brain aneurysm |
No Data |
| Cancer |
No Data |
| Dementia |
Alzheimer's
Dementia
absent
|
| Depression |
No Data |
| Diabetes |
No Data |
| Dystonia |
No Data |
| Epilepsy |
No Data |
| Heart disease |
No Data |
| Hypertension |
No Data |
| Multiple sclerosis |
No Data |
| Muscle disease |
No Data |
| Parkinson's |
No Data |
| Schizophrenia |
No Data |
| Suicide/Attempt |
No Data |
| Stroke |
No Data |
| Primary Clinical Diagnosis |
| Primary clinical diagnosis |
No Data |
| Secondary Neurological Diagnosis |
| Secondary neurological diagnoses |
Frontotemporal dementia
Other (specify)
Not Applicable
|
| Site of Symptom Onset |
| site of symptom onset |
No Data |
| Treatment |
| Current treatment |
Riluzole
PEG
NIPPV
Tracheotomy
Assisted Ventilation > 23 hours
Other (specify)
No Treatment
|
| Signs Supporting Diagnosis |
| Upper Motor Neuron Signs-Bulbar |
No Data |
| Upper Motor Neuron Signs-Cervical/upper limbs |
No Data |
| Upper Motor Neuron Signs-Thoracic/chest |
No Data |
| Upper Motor Neuron Signs-Lumbosacral/lower limbs |
No Data |
| Lower Motor Neuron Signs-Bulbar |
No Data |
| Lower Motor Neuron Signs-Cervical/upper limbs |
No Data |
| Lower Motor Neuron Signs-Thoracic/chest |
No Data |
| Lower Motor Neuron Signs-Lumbosacral/lower limbs |
No Data |
| EMG Studies |
| Bulbar |
No Data |
| Cervical/upper limbs |
No Data |
| Thoracic/chest |
No Data |
| Lumbosacral/lower limbs |
No Data |
| Genetics |
| SOD-1 mutation |
No Data |
| Other mutation |
No Data |
| Atypical Features of ALS/MND |
| Atypical features of ALS/MND |
sensory
autonomic
cerebellar
cognitive
Parkinsonian
sphincter
ocular
other
|
| Optional data |
| Current ALSFRS-R |
No Data |
| FVC |
108 (8/9/06) |
| smoking history |
No Data |
| years smoking |
No Data |
| Handedness |
No Data |
| Clinical Element Type: Motor Neuron Disorders |
| (Longitudinal, Series #6) |
| Longitudinal Data |
| Is this data Longitudinal (Follow-Up) Data? |
No Data |
| Family History |
| ALS/other MND |
No Data |
| Parkinson's disease |
No Data |
| Alzheimer's disease |
No Data |
| Other dementia |
No Data |
| Other neurodegenerative disease |
No Data |
| Medical History |
| Alzheimer's disease |
No Data |
| Ataxia |
No Data |
| Autism |
No Data |
| Bipolar (manic-depressive) |
No Data |
| Brain aneurysm |
No Data |
| Cancer |
No Data |
| Dementia |
Alzheimer's
Dementia
absent
|
| Depression |
No Data |
| Diabetes |
No Data |
| Dystonia |
No Data |
| Epilepsy |
No Data |
| Heart disease |
No Data |
| Hypertension |
No Data |
| Multiple sclerosis |
No Data |
| Muscle disease |
No Data |
| Parkinson's |
No Data |
| Schizophrenia |
No Data |
| Suicide/Attempt |
No Data |
| Stroke |
No Data |
| Primary Clinical Diagnosis |
| Primary clinical diagnosis |
No Data |
| Secondary Neurological Diagnosis |
| Secondary neurological diagnoses |
Frontotemporal dementia
Other (specify)
Not Applicable
|
| Site of Symptom Onset |
| site of symptom onset |
No Data |
| Treatment |
| Current treatment |
Riluzole
PEG
NIPPV
Tracheotomy
Assisted Ventilation > 23 hours
Other (specify)
No Treatment
|
| Signs Supporting Diagnosis |
| Upper Motor Neuron Signs-Bulbar |
No Data |
| Upper Motor Neuron Signs-Cervical/upper limbs |
No Data |
| Upper Motor Neuron Signs-Thoracic/chest |
No Data |
| Upper Motor Neuron Signs-Lumbosacral/lower limbs |
No Data |
| Lower Motor Neuron Signs-Bulbar |
No Data |
| Lower Motor Neuron Signs-Cervical/upper limbs |
No Data |
| Lower Motor Neuron Signs-Thoracic/chest |
No Data |
| Lower Motor Neuron Signs-Lumbosacral/lower limbs |
No Data |
| EMG Studies |
| Bulbar |
No Data |
| Cervical/upper limbs |
No Data |
| Thoracic/chest |
No Data |
| Lumbosacral/lower limbs |
No Data |
| Genetics |
| SOD-1 mutation |
No Data |
| Other mutation |
No Data |
| Atypical Features of ALS/MND |
| Atypical features of ALS/MND |
sensory
autonomic
cerebellar
cognitive
Parkinsonian
sphincter
ocular
other
|
| Optional data |
| Current ALSFRS-R |
No Data |
| FVC |
104 (9/8/06) |
| smoking history |
No Data |
| years smoking |
No Data |
| Handedness |
No Data |
| Clinical Element Type: Motor Neuron Disorders |
| (Longitudinal, Series #7) |
| Longitudinal Data |
| Is this data Longitudinal (Follow-Up) Data? |
No Data |
| Family History |
| ALS/other MND |
No Data |
| Parkinson's disease |
No Data |
| Alzheimer's disease |
No Data |
| Other dementia |
No Data |
| Other neurodegenerative disease |
No Data |
| Medical History |
| Alzheimer's disease |
No Data |
| Ataxia |
No Data |
| Autism |
No Data |
| Bipolar (manic-depressive) |
No Data |
| Brain aneurysm |
No Data |
| Cancer |
No Data |
| Dementia |
Alzheimer's
Dementia
absent
|
| Depression |
No Data |
| Diabetes |
No Data |
| Dystonia |
No Data |
| Epilepsy |
No Data |
| Heart disease |
No Data |
| Hypertension |
No Data |
| Multiple sclerosis |
No Data |
| Muscle disease |
No Data |
| Parkinson's |
No Data |
| Schizophrenia |
No Data |
| Suicide/Attempt |
No Data |
| Stroke |
No Data |
| Primary Clinical Diagnosis |
| Primary clinical diagnosis |
No Data |
| Secondary Neurological Diagnosis |
| Secondary neurological diagnoses |
Frontotemporal dementia
Other (specify)
Not Applicable
|
| Site of Symptom Onset |
| site of symptom onset |
No Data |
| Treatment |
| Current treatment |
Riluzole
PEG
NIPPV
Tracheotomy
Assisted Ventilation > 23 hours
Other (specify)
No Treatment
|
| Signs Supporting Diagnosis |
| Upper Motor Neuron Signs-Bulbar |
No Data |
| Upper Motor Neuron Signs-Cervical/upper limbs |
No Data |
| Upper Motor Neuron Signs-Thoracic/chest |
No Data |
| Upper Motor Neuron Signs-Lumbosacral/lower limbs |
No Data |
| Lower Motor Neuron Signs-Bulbar |
No Data |
| Lower Motor Neuron Signs-Cervical/upper limbs |
No Data |
| Lower Motor Neuron Signs-Thoracic/chest |
No Data |
| Lower Motor Neuron Signs-Lumbosacral/lower limbs |
No Data |
| EMG Studies |
| Bulbar |
No Data |
| Cervical/upper limbs |
No Data |
| Thoracic/chest |
No Data |
| Lumbosacral/lower limbs |
No Data |
| Genetics |
| SOD-1 mutation |
No Data |
| Other mutation |
No Data |
| Atypical Features of ALS/MND |
| Atypical features of ALS/MND |
sensory
autonomic
cerebellar
cognitive
Parkinsonian
sphincter
ocular
other
|
| Optional data |
| Current ALSFRS-R |
No Data |
| FVC |
100 (10/9/06) |
| smoking history |
No Data |
| years smoking |
No Data |
| Handedness |
No Data |
| Clinical Element Type: Motor Neuron Disorders |
| (Longitudinal, Series #8) |
| Longitudinal Data |
| Is this data Longitudinal (Follow-Up) Data? |
No Data |
| Family History |
| ALS/other MND |
No Data |
| Parkinson's disease |
No Data |
| Alzheimer's disease |
No Data |
| Other dementia |
No Data |
| Other neurodegenerative disease |
No Data |
| Medical History |
| Alzheimer's disease |
No Data |
| Ataxia |
No Data |
| Autism |
No Data |
| Bipolar (manic-depressive) |
No Data |
| Brain aneurysm |
No Data |
| Cancer |
No Data |
| Dementia |
Alzheimer's
Dementia
absent
|
| Depression |
No Data |
| Diabetes |
No Data |
| Dystonia |
No Data |
| Epilepsy |
No Data |
| Heart disease |
No Data |
| Hypertension |
No Data |
| Multiple sclerosis |
No Data |
| Muscle disease |
No Data |
| Parkinson's |
No Data |
| Schizophrenia |
No Data |
| Suicide/Attempt |
No Data |
| Stroke |
No Data |
| Primary Clinical Diagnosis |
| Primary clinical diagnosis |
No Data |
| Secondary Neurological Diagnosis |
| Secondary neurological diagnoses |
Frontotemporal dementia
Other (specify)
Not Applicable
|
| Site of Symptom Onset |
| site of symptom onset |
No Data |
| Treatment |
| Current treatment |
Riluzole
PEG
NIPPV
Tracheotomy
Assisted Ventilation > 23 hours
Other (specify)
No Treatment
|
| Signs Supporting Diagnosis |
| Upper Motor Neuron Signs-Bulbar |
No Data |
| Upper Motor Neuron Signs-Cervical/upper limbs |
No Data |
| Upper Motor Neuron Signs-Thoracic/chest |
No Data |
| Upper Motor Neuron Signs-Lumbosacral/lower limbs |
No Data |
| Lower Motor Neuron Signs-Bulbar |
No Data |
| Lower Motor Neuron Signs-Cervical/upper limbs |
No Data |
| Lower Motor Neuron Signs-Thoracic/chest |
No Data |
| Lower Motor Neuron Signs-Lumbosacral/lower limbs |
No Data |
| EMG Studies |
| Bulbar |
No Data |
| Cervical/upper limbs |
No Data |
| Thoracic/chest |
No Data |
| Lumbosacral/lower limbs |
No Data |
| Genetics |
| SOD-1 mutation |
No Data |
| Other mutation |
No Data |
| Atypical Features of ALS/MND |
| Atypical features of ALS/MND |
sensory
autonomic
cerebellar
cognitive
Parkinsonian
sphincter
ocular
other
|
| Optional data |
| Current ALSFRS-R |
39 (1/11/07) |
| FVC |
103 (1/11/07) |
| smoking history |
No Data |
| years smoking |
No Data |
| Handedness |
No Data |
| Clinical Element Type: Motor Neuron Disorders |
| (Longitudinal, Series #9) |
| Longitudinal Data |
| Is this data Longitudinal (Follow-Up) Data? |
No Data |
| Family History |
| ALS/other MND |
No Data |
| Parkinson's disease |
No Data |
| Alzheimer's disease |
No Data |
| Other dementia |
No Data |
| Other neurodegenerative disease |
No Data |
| Medical History |
| Alzheimer's disease |
No Data |
| Ataxia |
No Data |
| Autism |
No Data |
| Bipolar (manic-depressive) |
No Data |
| Brain aneurysm |
No Data |
| Cancer |
No Data |
| Dementia |
Alzheimer's
Dementia
absent
|
| Depression |
No Data |
| Diabetes |
No Data |
| Dystonia |
No Data |
| Epilepsy |
No Data |
| Heart disease |
No Data |
| Hypertension |
No Data |
| Multiple sclerosis |
No Data |
| Muscle disease |
No Data |
| Parkinson's |
No Data |
| Schizophrenia |
No Data |
| Suicide/Attempt |
No Data |
| Stroke |
No Data |
| Primary Clinical Diagnosis |
| Primary clinical diagnosis |
No Data |
| Secondary Neurological Diagnosis |
| Secondary neurological diagnoses |
Frontotemporal dementia
Other (specify)
Not Applicable
|
| Site of Symptom Onset |
| site of symptom onset |
No Data |
| Treatment |
| Current treatment |
Riluzole
PEG
NIPPV
Tracheotomy
Assisted Ventilation > 23 hours
Other (specify)
No Treatment
|
| Signs Supporting Diagnosis |
| Upper Motor Neuron Signs-Bulbar |
No Data |
| Upper Motor Neuron Signs-Cervical/upper limbs |
No Data |
| Upper Motor Neuron Signs-Thoracic/chest |
No Data |
| Upper Motor Neuron Signs-Lumbosacral/lower limbs |
No Data |
| Lower Motor Neuron Signs-Bulbar |
No Data |
| Lower Motor Neuron Signs-Cervical/upper limbs |
No Data |
| Lower Motor Neuron Signs-Thoracic/chest |
No Data |
| Lower Motor Neuron Signs-Lumbosacral/lower limbs |
No Data |
| EMG Studies |
| Bulbar |
No Data |
| Cervical/upper limbs |
No Data |
| Thoracic/chest |
No Data |
| Lumbosacral/lower limbs |
No Data |
| Genetics |
| SOD-1 mutation |
No Data |
| Other mutation |
No Data |
| Atypical Features of ALS/MND |
| Atypical features of ALS/MND |
sensory
autonomic
cerebellar
cognitive
Parkinsonian
sphincter
ocular
other
|
| Optional data |
| Current ALSFRS-R |
No Data |
| FVC |
96 (2/9/07) |
| smoking history |
No Data |
| years smoking |
No Data |
| Handedness |
No Data |
| Clinical Element Type: Motor Neuron Disorders |
| (Longitudinal, Series #10) |
| Longitudinal Data |
| Is this data Longitudinal (Follow-Up) Data? |
yes no |
| Family History |
| ALS/other MND |
No Data |
| Parkinson's disease |
No Data |
| Alzheimer's disease |
No Data |
| Other dementia |
No Data |
| Other neurodegenerative disease |
No Data |
| Medical History |
| Alzheimer's disease |
No Data |
| Ataxia |
No Data |
| Autism |
No Data |
| Bipolar (manic-depressive) |
No Data |
| Brain aneurysm |
No Data |
| Cancer |
No Data |
| Dementia |
Alzheimer's
Dementia
absent
|
| Depression |
No Data |
| Diabetes |
No Data |
| Dystonia |
No Data |
| Epilepsy |
No Data |
| Heart disease |
No Data |
| Hypertension |
No Data |
| Multiple sclerosis |
No Data |
| Muscle disease |
No Data |
| Parkinson's |
No Data |
| Schizophrenia |
No Data |
| Suicide/Attempt |
No Data |
| Stroke |
No Data |
| Primary Clinical Diagnosis |
| Primary clinical diagnosis |
No Data |
| Secondary Neurological Diagnosis |
| Secondary neurological diagnoses |
Frontotemporal dementia
Other (specify)
Not Applicable
|
| Site of Symptom Onset |
| site of symptom onset |
No Data |
| Treatment |
| Current treatment |
Riluzole
PEG
NIPPV
Tracheotomy
Assisted Ventilation > 23 hours
Other (specify)
No Treatment
|
| Signs Supporting Diagnosis |
| Upper Motor Neuron Signs-Bulbar |
No Data |
| Upper Motor Neuron Signs-Cervical/upper limbs |
No Data |
| Upper Motor Neuron Signs-Thoracic/chest |
No Data |
| Upper Motor Neuron Signs-Lumbosacral/lower limbs |
No Data |
| Lower Motor Neuron Signs-Bulbar |
No Data |
| Lower Motor Neuron Signs-Cervical/upper limbs |
No Data |
| Lower Motor Neuron Signs-Thoracic/chest |
No Data |
| Lower Motor Neuron Signs-Lumbosacral/lower limbs |
No Data |
| EMG Studies |
| Bulbar |
No Data |
| Cervical/upper limbs |
No Data |
| Thoracic/chest |
No Data |
| Lumbosacral/lower limbs |
No Data |
| Genetics |
| SOD-1 mutation |
No Data |
| Other mutation |
No Data |
| Atypical Features of ALS/MND |
| Atypical features of ALS/MND |
sensory
autonomic
cerebellar
cognitive
Parkinsonian
sphincter
ocular
other
|
| Optional data |
| Current ALSFRS-R |
39 (5/21/07) |
| FVC |
91% (5/21/07) |
| smoking history |
No Data |
| years smoking |
No Data |
| Handedness |
No Data |
| Clinical Element Type: Motor Neuron Disorders |
| (Longitudinal, Series #11) |
| Longitudinal Data |
| Is this data Longitudinal (Follow-Up) Data? |
No Data |
| Family History |
| ALS/other MND |
No Data |
| Parkinson's disease |
No Data |
| Alzheimer's disease |
No Data |
| Other dementia |
No Data |
| Other neurodegenerative disease |
No Data |
| Medical History |
| Alzheimer's disease |
No Data |
| Ataxia |
No Data |
| Autism |
No Data |
| Bipolar (manic-depressive) |
No Data |
| Brain aneurysm |
No Data |
| Cancer |
No Data |
| Dementia |
Alzheimer's
Dementia
absent
|
| Depression |
No Data |
| Diabetes |
No Data |
| Dystonia |
No Data |
| Epilepsy |
No Data |
| Heart disease |
No Data |
| Hypertension |
No Data |
| Multiple sclerosis |
No Data |
| Muscle disease |
No Data |
| Parkinson's |
No Data |
| Schizophrenia |
No Data |
| Suicide/Attempt |
No Data |
| Stroke |
No Data |
| Primary Clinical Diagnosis |
| Primary clinical diagnosis |
No Data |
| Secondary Neurological Diagnosis |
| Secondary neurological diagnoses |
Frontotemporal dementia
Other (specify)
Not Applicable
|
| Site of Symptom Onset |
| site of symptom onset |
No Data |
| Treatment |
| Current treatment |
Riluzole
PEG
NIPPV
Tracheotomy
Assisted Ventilation > 23 hours
Other (specify)
No Treatment
|
| Signs Supporting Diagnosis |
| Upper Motor Neuron Signs-Bulbar |
No Data |
| Upper Motor Neuron Signs-Cervical/upper limbs |
No Data |
| Upper Motor Neuron Signs-Thoracic/chest |
No Data |
| Upper Motor Neuron Signs-Lumbosacral/lower limbs |
No Data |
| Lower Motor Neuron Signs-Bulbar |
No Data |
| Lower Motor Neuron Signs-Cervical/upper limbs |
No Data |
| Lower Motor Neuron Signs-Thoracic/chest |
No Data |
| Lower Motor Neuron Signs-Lumbosacral/lower limbs |
No Data |
| EMG Studies |
| Bulbar |
No Data |
| Cervical/upper limbs |
No Data |
| Thoracic/chest |
No Data |
| Lumbosacral/lower limbs |
No Data |
| Genetics |
| SOD-1 mutation |
No Data |
| Other mutation |
No Data |
| Atypical Features of ALS/MND |
| Atypical features of ALS/MND |
sensory
autonomic
cerebellar
cognitive
Parkinsonian
sphincter
ocular
other
|
| Optional data |
| Current ALSFRS-R |
36 (6/25/07) |
| FVC |
83% (6/25/07) |
| smoking history |
No Data |
| years smoking |
No Data |
| Handedness |
No Data |
| Clinical Element Type: Motor Neuron Disorders |
| (Longitudinal, Series #12) |
| Longitudinal Data |
| Is this data Longitudinal (Follow-Up) Data? |
yes no |
| Family History |
| ALS/other MND |
No Data |
| Parkinson's disease |
No Data |
| Alzheimer's disease |
No Data |
| Other dementia |
No Data |
| Other neurodegenerative disease |
No Data |
| Medical History |
| Alzheimer's disease |
No Data |
| Ataxia |
No Data |
| Autism |
No Data |
| Bipolar (manic-depressive) |
No Data |
| Brain aneurysm |
No Data |
| Cancer |
No Data |
| Dementia |
Alzheimer's
Dementia
absent
|
| Depression |
No Data |
| Diabetes |
No Data |
| Dystonia |
No Data |
| Epilepsy |
No Data |
| Heart disease |
No Data |
| Hypertension |
No Data |
| Multiple sclerosis |
No Data |
| Muscle disease |
No Data |
| Parkinson's |
No Data |
| Schizophrenia |
No Data |
| Suicide/Attempt |
No Data |
| Stroke |
No Data |
| Primary Clinical Diagnosis |
| Primary clinical diagnosis |
No Data |
| Secondary Neurological Diagnosis |
| Secondary neurological diagnoses |
Frontotemporal dementia
Other (specify)
Not Applicable
|
| Site of Symptom Onset |
| site of symptom onset |
No Data |
| Treatment |
| Current treatment |
Riluzole
PEG
NIPPV
Tracheotomy
Assisted Ventilation > 23 hours
Other (specify)
No Treatment
|
| Signs Supporting Diagnosis |
| Upper Motor Neuron Signs-Bulbar |
No Data |
| Upper Motor Neuron Signs-Cervical/upper limbs |
No Data |
| Upper Motor Neuron Signs-Thoracic/chest |
No Data |
| Upper Motor Neuron Signs-Lumbosacral/lower limbs |
No Data |
| Lower Motor Neuron Signs-Bulbar |
No Data |
| Lower Motor Neuron Signs-Cervical/upper limbs |
No Data |
| Lower Motor Neuron Signs-Thoracic/chest |
No Data |
| Lower Motor Neuron Signs-Lumbosacral/lower limbs |
No Data |
| EMG Studies |
| Bulbar |
No Data |
| Cervical/upper limbs |
No Data |
| Thoracic/chest |
No Data |
| Lumbosacral/lower limbs |
No Data |
| Genetics |
| SOD-1 mutation |
No Data |
| Other mutation |
No Data |
| Atypical Features of ALS/MND |
| Atypical features of ALS/MND |
sensory
autonomic
cerebellar
cognitive
Parkinsonian
sphincter
ocular
other
|
| Optional data |
| Current ALSFRS-R |
33 (7/9/07) |
| FVC |
82% (7/9/07) |
| smoking history |
No Data |
| years smoking |
No Data |
| Handedness |
No Data |
| Clinical Element Type: Motor Neuron Disorders |
| (Baseline) |
| Longitudinal Data |
| Is this data Longitudinal (Follow-Up) Data? |
yes no |
| Family History |
| ALS/other MND |
present absent unknown
Notes: AUNT ON MOTHER |
| Parkinson's disease |
present absent unknown |
| Alzheimer's disease |
present absent unknown |
| Other dementia |
present absent unknown |
| Other neurodegenerative disease |
present absent unknown
Notes: COUSIN |
| Medical History |
| Alzheimer's disease |
present absent |
| Ataxia |
present absent |
| Autism |
present absent |
| Bipolar (manic-depressive) |
present absent |
| Brain aneurysm |
present absent |
| Cancer |
present absent |
| Dementia |
Alzheimer's
Dementia
absent
|
| Depression |
present absent |
| Diabetes |
present absent |
| Dystonia |
present absent |
| Epilepsy |
present absent |
| Heart disease |
present absent |
| Hypertension |
present absent |
| Multiple sclerosis |
present absent |
| Muscle disease |
present absent |
| Parkinson's |
present absent |
| Schizophrenia |
present absent |
| Suicide/Attempt |
present absent |
| Stroke |
present absent |
| Primary Clinical Diagnosis |
| Primary clinical diagnosis |
ALS |
| Secondary Neurological Diagnosis |
| Secondary neurological diagnoses |
Frontotemporal dementia
Other (specify)
Not Applicable
|
| Site of Symptom Onset |
| site of symptom onset |
Limb-lower |
| Treatment |
| Current treatment |
Riluzole
PEG
NIPPV
Tracheotomy
Assisted Ventilation > 23 hours
Other (specify)
No Treatment
|
| Signs Supporting Diagnosis |
| Upper Motor Neuron Signs-Bulbar |
definite indeterminate absent not tested |
| Upper Motor Neuron Signs-Cervical/upper limbs |
definite indeterminate absent not tested |
| Upper Motor Neuron Signs-Thoracic/chest |
definite indeterminate absent not tested |
| Upper Motor Neuron Signs-Lumbosacral/lower limbs |
definite indeterminate absent not tested |
| Lower Motor Neuron Signs-Bulbar |
definite indeterminate absent not tested |
| Lower Motor Neuron Signs-Cervical/upper limbs |
definite indeterminate absent not tested |
| Lower Motor Neuron Signs-Thoracic/chest |
definite indeterminate absent not tested |
| Lower Motor Neuron Signs-Lumbosacral/lower limbs |
definite indeterminate absent not tested |
| EMG Studies |
| Bulbar |
acute denervation chronic denervation negative not examined acute/chronic denervation |
| Cervical/upper limbs |
acute denervation chronic denervation negative not examined acute/chronic denervation |
| Thoracic/chest |
acute denervation chronic denervation negative not examined acute/chronic denervation |
| Lumbosacral/lower limbs |
acute denervation chronic denervation negative not examined acute/chronic denervation |
| Genetics |
| SOD-1 mutation |
No Data |
| Other mutation |
No Data |
| Atypical Features of ALS/MND |
| Atypical features of ALS/MND |
sensory
autonomic
cerebellar
cognitive
Parkinsonian
sphincter
ocular
other
|
| Optional data |
| Current ALSFRS-R |
No Data |
| FVC |
108 |
| smoking history |
never former smoker current smoker |
| years smoking |
14 |
| Handedness |
Right Left Ambidextrous |
| Clinical Element Type: Motor Neuron Disorders |
| (Longitudinal, Series #13) |
| Longitudinal Data |
| Is this data Longitudinal (Follow-Up) Data? |
yes no |
| Family History |
| ALS/other MND |
present absent unknown
Notes: AUNT ON MOTHER |
| Parkinson's disease |
present absent unknown |
| Alzheimer's disease |
present absent unknown |
| Other dementia |
present absent unknown |
| Other neurodegenerative disease |
present absent unknown
Notes: COUSIN |
| Medical History |
| Alzheimer's disease |
present absent |
| Ataxia |
present absent |
| Autism |
present absent |
| Bipolar (manic-depressive) |
present absent |
| Brain aneurysm |
present absent |
| Cancer |
present absent |
| Dementia |
Alzheimer's
Dementia
absent
|
| Depression |
present absent |
| Diabetes |
present absent |
| Dystonia |
present absent |
| Epilepsy |
present absent |
| Heart disease |
present absent |
| Hypertension |
present absent |
| Multiple sclerosis |
present absent |
| Muscle disease |
present absent |
| Parkinson's |
present absent |
| Schizophrenia |
present absent |
| Suicide/Attempt |
present absent |
| Stroke |
present absent |
| Primary Clinical Diagnosis |
| Primary clinical diagnosis |
ALS |
| Secondary Neurological Diagnosis |
| Secondary neurological diagnoses |
Frontotemporal dementia
Other (specify)
Not Applicable
|
| Site of Symptom Onset |
| site of symptom onset |
Limb-lower |
| Treatment |
| Current treatment |
Riluzole
PEG
NIPPV
Tracheotomy
Assisted Ventilation > 23 hours
Other (specify)
No Treatment
|
| Signs Supporting Diagnosis |
| Upper Motor Neuron Signs-Bulbar |
definite indeterminate absent not tested |
| Upper Motor Neuron Signs-Cervical/upper limbs |
definite indeterminate absent not tested |
| Upper Motor Neuron Signs-Thoracic/chest |
definite indeterminate absent not tested |
| Upper Motor Neuron Signs-Lumbosacral/lower limbs |
definite indeterminate absent not tested |
| Lower Motor Neuron Signs-Bulbar |
definite indeterminate absent not tested |
| Lower Motor Neuron Signs-Cervical/upper limbs |
definite indeterminate absent not tested |
| Lower Motor Neuron Signs-Thoracic/chest |
definite indeterminate absent not tested |
| Lower Motor Neuron Signs-Lumbosacral/lower limbs |
definite indeterminate absent not tested |
| EMG Studies |
| Bulbar |
acute denervation chronic denervation negative not examined acute/chronic denervation |
| Cervical/upper limbs |
acute denervation chronic denervation negative not examined acute/chronic denervation |
| Thoracic/chest |
acute denervation chronic denervation negative not examined acute/chronic denervation |
| Lumbosacral/lower limbs |
acute denervation chronic denervation negative not examined acute/chronic denervation |
| Genetics |
| SOD-1 mutation |
No Data |
| Other mutation |
No Data |
| Atypical Features of ALS/MND |
| Atypical features of ALS/MND |
sensory
autonomic
cerebellar
cognitive
Parkinsonian
sphincter
ocular
other
|
| Optional data |
| Current ALSFRS-R |
33/48 (8/27/07) |
| FVC |
70 % (8/20/07) |
| smoking history |
never former smoker current smoker |
| years smoking |
14 |
| Handedness |
Right Left Ambidextrous |
| Clinical Element Type: Motor Neuron Disorders |
| (Longitudinal, Series #14) |
| Longitudinal Data |
| Is this data Longitudinal (Follow-Up) Data? |
yes no |
| Family History |
| ALS/other MND |
present absent unknown
Notes: AUNT ON MOTHER |
| Parkinson's disease |
present absent unknown |
| Alzheimer's disease |
present absent unknown |
| Other dementia |
present absent unknown |
| Other neurodegenerative disease |
present absent unknown
Notes: COUSIN |
| Medical History |
| Alzheimer's disease |
present absent |
| Ataxia |
present absent |
| Autism |
present absent |
| Bipolar (manic-depressive) |
present absent |
| Brain aneurysm |
present absent |
| Cancer |
present absent |
| Dementia |
Alzheimer's
Dementia
absent
|
| Depression |
present absent |
| Diabetes |
present absent |
| Dystonia |
present absent |
| Epilepsy |
present absent |
| Heart disease |
present absent |
| Hypertension |
present absent |
| Multiple sclerosis |
present absent |
| Muscle disease |
present absent |
| Parkinson's |
present absent |
| Schizophrenia |
present absent |
| Suicide/Attempt |
present absent |
| Stroke |
present absent |
| Primary Clinical Diagnosis |
| Primary clinical diagnosis |
ALS |
| Secondary Neurological Diagnosis |
| Secondary neurological diagnoses |
Frontotemporal dementia
Other (specify)
Not Applicable
|
| Site of Symptom Onset |
| site of symptom onset |
Limb-lower |
| Treatment |
| Current treatment |
Riluzole
PEG
NIPPV
Tracheotomy
Assisted Ventilation > 23 hours
Other (specify)
No Treatment
|
| Signs Supporting Diagnosis |
| Upper Motor Neuron Signs-Bulbar |
definite indeterminate absent not tested |
| Upper Motor Neuron Signs-Cervical/upper limbs |
definite indeterminate absent not tested |
| Upper Motor Neuron Signs-Thoracic/chest |
definite indeterminate absent not tested |
| Upper Motor Neuron Signs-Lumbosacral/lower limbs |
definite indeterminate absent not tested |
| Lower Motor Neuron Signs-Bulbar |
definite indeterminate absent not tested |
| Lower Motor Neuron Signs-Cervical/upper limbs |
definite indeterminate absent not tested |
| Lower Motor Neuron Signs-Thoracic/chest |
definite indeterminate absent not tested |
| Lower Motor Neuron Signs-Lumbosacral/lower limbs |
definite indeterminate absent not tested |
| EMG Studies |
| Bulbar |
acute denervation chronic denervation negative not examined acute/chronic denervation |
| Cervical/upper limbs |
acute denervation chronic denervation negative not examined acute/chronic denervation |
| Thoracic/chest |
acute denervation chronic denervation negative not examined acute/chronic denervation |
| Lumbosacral/lower limbs |
acute denervation chronic denervation negative not examined acute/chronic denervation |
| Genetics |
| SOD-1 mutation |
No Data |
| Other mutation |
No Data |
| Atypical Features of ALS/MND |
| Atypical features of ALS/MND |
sensory
autonomic
cerebellar
cognitive
Parkinsonian
sphincter
ocular
other
|
| Optional data |
| Current ALSFRS-R |
28/78 (12/17/07) |
| FVC |
58 % (12/17/07) |
| smoking history |
never former smoker current smoker |
| years smoking |
14 |
| Handedness |
Right Left Ambidextrous |
| Clinical Element Type: Motor Neuron Disorders |
| (Longitudinal, Series #15) |
| Longitudinal Data |
| Is this data Longitudinal (Follow-Up) Data? |
yes no |
| Family History |
| ALS/other MND |
present absent unknown
Notes: AUNT ON MOTHER |
| Parkinson's disease |
present absent unknown |
| Alzheimer's disease |
present absent unknown |
| Other dementia |
present absent unknown |
| Other neurodegenerative disease |
present absent unknown
Notes: COUSIN |
| Medical History |
| Alzheimer's disease |
present absent |
| Ataxia |
present absent |
| Autism |
present absent |
| Bipolar (manic-depressive) |
present absent |
| Brain aneurysm |
present absent |
| Cancer |
present absent |
| Dementia |
Alzheimer's
Dementia
absent
|
| Depression |
present absent |
| Diabetes |
present absent |
| Dystonia |
present absent |
| Epilepsy |
present absent |
| Heart disease |
present absent |
| Hypertension |
present absent |
| Multiple sclerosis |
present absent |
| Muscle disease |
present absent |
| Parkinson's |
present absent |
| Schizophrenia |
present absent |
| Suicide/Attempt |
present absent |
| Stroke |
present absent |
| Primary Clinical Diagnosis |
| Primary clinical diagnosis |
ALS |
| Secondary Neurological Diagnosis |
| Secondary neurological diagnoses |
Frontotemporal dementia
Other (specify)
Not Applicable
|
| Site of Symptom Onset |
| site of symptom onset |
Limb-lower |
| Treatment |
| Current treatment |
Riluzole
PEG
NIPPV
Tracheotomy
Assisted Ventilation > 23 hours
Other (specify)
No Treatment
|
| Signs Supporting Diagnosis |
| Upper Motor Neuron Signs-Bulbar |
definite indeterminate absent not tested |
| Upper Motor Neuron Signs-Cervical/upper limbs |
definite indeterminate absent not tested |
| Upper Motor Neuron Signs-Thoracic/chest |
definite indeterminate absent not tested |
| Upper Motor Neuron Signs-Lumbosacral/lower limbs |
definite indeterminate absent not tested |
| Lower Motor Neuron Signs-Bulbar |
definite indeterminate absent not tested |
| Lower Motor Neuron Signs-Cervical/upper limbs |
definite indeterminate absent not tested |
| Lower Motor Neuron Signs-Thoracic/chest |
definite indeterminate absent not tested |
| Lower Motor Neuron Signs-Lumbosacral/lower limbs |
definite indeterminate absent not tested |
| EMG Studies |
| Bulbar |
acute denervation chronic denervation negative not examined acute/chronic denervation |
| Cervical/upper limbs |
acute denervation chronic denervation negative not examined acute/chronic denervation |
| Thoracic/chest |
acute denervation chronic denervation negative not examined acute/chronic denervation |
| Lumbosacral/lower limbs |
acute denervation chronic denervation negative not examined acute/chronic denervation |
| Genetics |
| SOD-1 mutation |
No Data |
| Other mutation |
present absent unknown
Notes: C9ORF72: (GGGGCC)N EXPANSION |
| Atypical Features of ALS/MND |
| Atypical features of ALS/MND |
sensory
autonomic
cerebellar
cognitive
Parkinsonian
sphincter
ocular
other
|
| Optional data |
| Current ALSFRS-R |
23/48(4/28/2008) |
| FVC |
57 % (4/28/2008) |
| smoking history |
never former smoker current smoker |
| years smoking |
14 |
| Handedness |
Right Left Ambidextrous |