ADPKD Patient Registry (ADPKD)
|The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details.|
|ClinicalTrials.gov Identifier: NCT04039061|
Recruitment Status : Recruiting
First Posted : July 31, 2019
Last Update Posted : September 9, 2019
The purpose of the ADPKD Registry is to create an online patient network that includes at least 5,000 people with Autosomal Dominant Polycystic Kidney Disease (ADPKD) who contribute data on their health and other topics. The ADPKD Patient Registry aims to support important scientific discoveries and support patient needs in the following ways:
- Connect ADPKD patients with opportunities to join clinical studies.
- Collect data for the research community to better describe the ADPKD disease experience and improve patient care.
- Engage with patients by measuring quality of life outcomes.
|Condition or disease|
|Polycystic Kidney Diseases|
The ADPKD Registry will be a patient-powered network of people with ADPKD. This data will inform new research to improve ADPKD patient outcomes, learn more about the patient journey and discover unmet medical needs. We collect data most relevant to your ADPKD diagnosis, its major symptoms and management, as well as key demographic data (no personally identifiable information is shared). A Registry keeps information in one place making it easier for researchers to utilize Registry information while still protecting the privacy of those who take part. The Registry will be hosted on a secure, online platform that patients can access using their home computers, tablets or phones.
The purpose of the ADPKD Registry is to allow PKD patients to:
- Connect with researchers and express interest in taking part in certain clinical studies for ADPKD, including studies of new medications and other treatments.
- Take confidential health-related surveys. These surveys are aimed at better understanding of the health of people with PKD across their lifespans.
|Study Type :||Observational [Patient Registry]|
|Estimated Enrollment :||3000 participants|
|Target Follow-Up Duration:||10 Years|
|Official Title:||Autosomal Dominant Polycystic Kidney Disease Patient Registry|
|Actual Study Start Date :||September 4, 2019|
|Estimated Primary Completion Date :||September 4, 2029|
|Estimated Study Completion Date :||September 4, 2029|
Patients with a diagnosis, or suspected diagnosis, of ADPKD
- Number of people with polycystic kidney disease who experience health-related quality-of-life changes [ Time Frame: 1 year ]
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT04039061
|Contact: Elise Hooverfirstname.lastname@example.org|
|Contact: Registry email@example.com|
|United States, Missouri|
|Kansas City, Missouri, United States, 64131|
|Contact: Elise Hoover firstname.lastname@example.org|