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| ID | Type | Description | Link |
|---|---|---|---|
| 1U54DK083908-01 | U.S. NIH Grant/Contract | View source |
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| Name | Class |
|---|---|
| National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) | NIH |
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Assessment of Health-related Quality of Life in Rare Kidney Stone Formers in the Rare Kidney Stone Consortium
The purpose of this study is to learn about Health-related Quality Of Life (HRQoL) in patients enrolled in the Rare Kidney Stone Consortium (RKSC) registries. Quality of life studies look at different aspects of both physical and mental components of people's lives. HRQoL data for people affected by kidney stones are not currently available for people followed over time.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Primary Hyperoxaluria | All rare kidney stone patients enrolled in RKSC registries that are able to communicate using the English language, are able to consent to participation in the study, have internet access with an email account and/or a valid address and are at minimum 5 years of age (for SF-10) |
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| Cystinuria | All rare kidney stone patients enrolled in RKSC registries that are able to communicate using the English language, are able to consent to participation in the study, have internet access with an email account and/or a valid address and are at minimum 5 years of age (for SF-10) |
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| Dent Disease | All rare kidney stone patients enrolled in RKSC registries that are able to communicate using the English language, are able to consent to participation in the study, have internet access with an email account and/or a valid address and are at minimum 5 years of age (for SF-10) |
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| APRT deficiency | All rare kidney stone patients enrolled in RKSC registries that are able to communicate using the English language, are able to consent to participation in the study, have internet access with an email account and/or a valid address and are at minimum 5 years of age (for SF-10) |
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Health-related Quality of Life in Rare Kidney Stone Questionnaire | Other |
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| Measure | Description | Time Frame |
|---|---|---|
| Assessment of HRQoL in patients with rare kidney stones | Assessment of HRQoL in patients with rare kidney stones. Comparison of HRQoL results between rare kidney stone formers, general population and other populations with relevant chronic diseases | Once a year for up to 5 years after signed consent |
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Inclusion Criteria:
Exclusion Criteria:
None, if inclusion criteria are met
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Sample will be selected from the Rare Kidney Stone Consortium registries
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| Name | Affiliation | Role |
|---|---|---|
| David Goldfarb, MD | NYU Langone Health | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Primary Hyperoxaluria and Dent Disease Registry - Mayo Clinic | Rochester | Minnesota | 55905 | United States | ||
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 24253538 | Background | Modersitzki F, Pizzi L, Grasso M, Goldfarb DS. Health-related quality of life (HRQoL) in cystine compared with non-cystine stone formers. Urolithiasis. 2014 Feb;42(1):53-60. doi: 10.1007/s00240-013-0621-4. Epub 2013 Nov 20. |
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| ID | Term |
|---|---|
| D006960 | Hyperoxaluria, Primary |
| D003555 | Cystinuria |
| C538228 | Adenine phosphoribosyltransferase deficiency |
| D057973 | Dent Disease |
| ID | Term |
|---|---|
| D006959 | Hyperoxaluria |
| D007674 | Kidney Diseases |
| D014570 | Urologic Diseases |
| D052776 | Female Urogenital Diseases |
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| ID | Term |
|---|---|
| D011788 | Quality of Life |
| ID | Term |
|---|---|
| D006304 | Health Status |
| D003710 | Demography |
| D015991 | Epidemiologic Measurements |
| D011634 | Public Health |
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| New York University School of Medicine - Cystinuria Registry |
| New York |
| New York |
| 1001+ |
| United States |
| APRT Registry - Landspitali Universtiy Hospital | Reykjavik | Iceland |
| D005261 |
| Female Urogenital Diseases and Pregnancy Complications |
| D000091642 | Urogenital Diseases |
| D052801 | Male Urogenital Diseases |
| D002239 | Carbohydrate Metabolism, Inborn Errors |
| D008661 | Metabolism, Inborn Errors |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D008659 | Metabolic Diseases |
| D009750 | Nutritional and Metabolic Diseases |
| D000608 | Renal Aminoacidurias |
| D015499 | Renal Tubular Transport, Inborn Errors |
| D040181 | Genetic Diseases, X-Linked |
| D004778 |
| Environment and Public Health |