Rare Kidney Stone Consortium Patient Registry
| Status: | Recruiting |
|---|---|
| Conditions: | Other Indications, Nephrology, Urology |
| Therapuetic Areas: | Nephrology / Urology, Other |
| Healthy: | No |
| Age Range: | Any - 100 |
| Updated: | 1/23/2019 |
| Start Date: | July 2003 |
| End Date: | June 2019 |
| Contact: | Julie B. Olson, RN |
| Email: | rarekidneystones@mayo.edu |
| Phone: | 507-538-5995 |
Rare Kidney Stone Consortium Registry for Hereditary Kidney Stone Diseases
The purpose of this study is to collect medical information from a large number of patients
in many areas of the world with primary hyperoxaluria (PH), Dent disease, Cystinuria and APRT
deficiency. This information will create a registry that will help us to compare similarities
and differences in patients and their symptoms. The more patients we are able to enter into
the registry, the more we will be able to understand the Primary Hyperoxalurias,Dent disease,
cystinuria and APRT and learn better ways of caring for patients with these diseases.
in many areas of the world with primary hyperoxaluria (PH), Dent disease, Cystinuria and APRT
deficiency. This information will create a registry that will help us to compare similarities
and differences in patients and their symptoms. The more patients we are able to enter into
the registry, the more we will be able to understand the Primary Hyperoxalurias,Dent disease,
cystinuria and APRT and learn better ways of caring for patients with these diseases.
This study involves the collection of medical information to create a computer database or
registry for patients with PH, Dent disease, cystinuria and APRT deficiency. The information
will be entered into the registry by your physician or health care provider. The computer web
site for the registry is secure and protected by a required password. Some information which
will be entered may include your age at first symptoms of PH,Dent disease, cystinuria or
APRT, laboratory values, kidney function and the progress of your health over time.
Information for an individual patient can only be viewed by the appropriate physician or
staff. Once the information is entered into the registry, you will only be identified by a
code number.
registry for patients with PH, Dent disease, cystinuria and APRT deficiency. The information
will be entered into the registry by your physician or health care provider. The computer web
site for the registry is secure and protected by a required password. Some information which
will be entered may include your age at first symptoms of PH,Dent disease, cystinuria or
APRT, laboratory values, kidney function and the progress of your health over time.
Information for an individual patient can only be viewed by the appropriate physician or
staff. Once the information is entered into the registry, you will only be identified by a
code number.
Inclusion Criteria:
- Individuals must have a definitive diagnosis of Primary Hyperoxaluria, Dent Disease,
Cystinuria or APRT Deficiency.
- Individuals have a family history of a sibling with Primary Hyperoxaluria,Dent
Disease, Cystinuria or APRT Deficiency.
Exclusion Criteria:
- Individuals who do not have Primary Hyperoxaluria, Dent Disease, Cystinuria or APRT
Deficiency.
We found this trial at
4
sites
Reykjavik,
Principal Investigator: Vidar Edvardsson, MD
Phone: 354-824-5227
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New York, New York 10010
Principal Investigator: David Goldfarb, MD
Phone: 212-263-0744
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Rochester, Minnesota 55905
Principal Investigator: John C Lieske, MD
Phone: 800-270-4637
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Rochester, Minnesota 55905
Principal Investigator: Dawn S. Milliner, MD
Phone: 800-270-4637
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