Assessment of Health-related Quality of Life in Rare Kidney Stone Formers in the Rare Kidney Stone Consortium

Health-related Quality of Life in Rare Kidney Stone

Sponsors

Lead sponsor: NYU Langone Health

Collaborator: National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

Source NYU Langone Health
Brief Summary

Assessment of Health-related Quality of Life in Rare Kidney Stone Formers in the Rare Kidney Stone Consortium

Detailed Description

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.

Overall Status Recruiting
Start Date August 2013
Completion Date July 2021
Primary Completion Date July 2021
Study Type Observational [Patient Registry]
Primary Outcome
Measure Time Frame
Assessment of HRQoL in patients with rare kidney stones Once a year for up to 5 years after signed consent
Enrollment 320
Condition
Intervention

Intervention type: Other

Intervention name: Health-related Quality of Life in Rare Kidney Stone Questionnaire

Eligibility

Sampling method: Non-Probability Sample

Criteria:

Inclusion Criteria:

- Qualify to participate in one of the Rare Kidney Stone Registries.

- Be at least 5 years old (for SF-10)

- Are able to communicate using the English language

- Consent to participate in the study (or "assent" if under 18 years old)

- Have internet access with an email account or a valid home address

Exclusion Criteria:

None, if inclusion criteria are met

Gender: All

Minimum age: 5 Years

Maximum age: N/A

Healthy volunteers: No

Overall Official
Last Name Role Affiliation
David Goldfarb, MD Principal Investigator NYU Langone Health
Overall Contact

Last name: Frank Modersitzki, MPH

Phone: 212-686-7500

Phone ext: 6379

Email: [email protected]

Location
facility status contact investigator
Primary Hyperoxaluria and Dent Disease Registry - Mayo Clinic | Rochester, Minnesota, 55905, United States Recruiting Barb M Seide, Study Coord 800-270-4637 [email protected] Dawn S Milliner, MD Principal Investigator
New York University School of Medicine - Cystinuria Registry | New York, New York, 1001+, United States Recruiting Frank Modersitzki, MPH 212-686-7500 6379 [email protected] David S Goldfarb, MD Principal Investigator
APRT Registry - Landspitali Universtiy Hospital | Reykjavik, Iceland Not yet recruiting Vidar Edvardsson, MD 354-824-5227 [email protected] Vidar Edvardsson, MD Principal Investigator
Location Countries

Iceland

United States

Verification Date

October 2019

Responsible Party

Responsible party type: Sponsor

Has Expanded Access No
Condition Browse
Arm Group

Arm group label: Primary Hyperoxaluria

Description: 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)

Arm group label: Cystinuria

Description: 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)

Arm group label: Dent Disease

Description: 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)

Arm group label: APRT deficiency

Description: 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)

Study Design Info

Observational model: Cohort

Time perspective: Prospective

Source: ClinicalTrials.gov