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| Name | Class |
|---|---|
| Amyloidosis Research Consortium | OTHER |
| Amyloidosis Support Groups | OTHER |
| Amyloidosis Foundation | OTHER |
| Quality Metrics |
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This is an online registry to document the psychometric properties of SF-36v2 among patients with AL Amyloidosis, to document patients' burden of disease, to better understand the patient's experience and to follow quality of life issues using a variety of QOL measures.
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| non-interventional | Other |
| Measure | Description | Time Frame |
|---|---|---|
| Psychometric evaluation of short-form 36 (SF-36v2) in patients with AL Amyloidosis | Change from Baseline to 12 months |
| Measure | Description | Time Frame |
|---|---|---|
| Calculate burden of illness from participants using SF-36 Mental Component Score (MCS) and Physical Component Score (PCS) compared with sample from US general population and three other chronic conditions: Congestive Heart Failure, Lymphoma and COPD | The comparison is made to other populations from the baseline cross-sectional measurements. There is no timeframe, except baseline | Baseline- cross sectional |
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Inclusion Criteria:
Exclusion Criteria:
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Patients with Al Amyloidosis
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Online registry | South San Francisco | California | 94080 | United States |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 28103898 | Derived | Bayliss M, McCausland KL, Guthrie SD, White MK. The burden of amyloid light chain amyloidosis on health-related quality of life. Orphanet J Rare Dis. 2017 Jan 19;12(1):15. doi: 10.1186/s13023-016-0564-2. |
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| ID | Term |
|---|---|
| D000075363 | Immunoglobulin Light-chain Amyloidosis |
| D000686 | Amyloidosis |
| ID | Term |
|---|---|
| D054219 | Neoplasms, Plasma Cell |
| D009370 | Neoplasms by Histologic Type |
| D009369 | Neoplasms |
| D057165 | Proteostasis Deficiencies |
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| UNKNOWN |
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| Assess the pathway to diagnosis and treatment through a disease history specific questionnaire collecting organ involvement, initial symptoms, diagnosis duration, treatment received and other disease characteristics | The analysis is done atbaseline . | Baseline- cross sectional |
| Psychometric evaluation of Kansas City Cardiomyopathy Questionnaire (KCCQ-12) in patients with AL Amyloidosis | Change from Baseline to 12 months |
| Psychometric evaluation of Patient Global Impression-Severity Scale (PGI-S) in patients with AL Amyloidosis | Change from Baseline to 12 months |
| Psychometric evaluation of Patient Global Assessment of Functioning (GAF) Scale in patients with AL Amyloidosis | Change from Baseline to 12 months |
| Psychometric evaluation of Hematology Patient Reported Symptom Screen (HPRSS) in patients with AL Amyloidosis | Change from Baseline to 12 months |
| Psychometric evaluation of Work Productivity and Activity Questionnaire: Specific Health Problem V2.0 (WPAI:SHP) in patients with AL Amyloidosis | Change from Baseline to 12 months |
| Psychometric evaluation of MOS 6-Item Sleep Scale Standard in patients with AL Amyloidosis | Change from Baseline to 12 months |
| D008659 | Metabolic Diseases |
| D009750 | Nutritional and Metabolic Diseases |
| D008232 | Lymphoproliferative Disorders |
| D007160 | Immunoproliferative Disorders |
| D007154 | Immune System Diseases |
| D010265 | Paraproteinemias |