Clinical trial · Observational
National Registry of Rare Kidney Diseases
National Registry of Rare Kidney Diseases (RaDaR)
- Source
- ClinicalTrials.gov
- Retrieved
- Sep 8, 2026
- Layer
- normalized (units and labels harmonized; values unchanged)
- Run
- ING-CLINICALTRIALS-20260908-000001
Summary
Brief summary (as posted)
The goal of this National Registry is to is to collect information from patients with rare kidney diseases, so that it that can be used for research. The purpose of this research is to: * Develop Clinical Guidelines for specific rare kidney diseases. These are written recommendations on how to diagnose and treat a medical condition. * Audit treatments and outcomes. An audit makes checks to see if what should be done is being done and asks if it could be done better. * Further the development of future treatments. Participants will be invited to participate on clinical trials and other studies. The registry has the capacity to feedback relevant information to patients and in conjunction with Patient Knows Best (Home - Patients Know Best), allows patients to provide information themselves, including their own reported quality of life and outcome measures.
Conditions
Conditions (84)
Free-text conditions as registered, with the CancerIndex entity they were reconciled to and the match type.
| Condition (as posted) | Mapped entity | Match | Confidence |
|---|---|---|---|
| Adenine Phosphoribosyltransferase Deficiency | — | UNRESOLVED | — |
| AH Amyloidosis | AH Amyloidosis | ONTOLOGY_EXACT | 0.98 |
| AHL Amyloidosis | AHL Amyloidosis | ONTOLOGY_EXACT | 0.98 |
| AL Amyloidosis | AL Amyloidosis | ONTOLOGY_EXACT | 0.98 |
| Alport Syndrome | — | UNRESOLVED | — |
| Atypical Hemolytic Uremic Syndrome | — | UNRESOLVED | — |
| Autoimmune Distal Renal Tubular Acidosis | — | UNRESOLVED | — |
| Autosomal Dominant Polycystic Kidney Disease | — | UNRESOLVED | — |
Interventions
Interventions (0)
Data not yet available
Design
Arms and outcomes
Arms (31)
- label
- Alport Syndrome Rare Disease Group
- description
- The evidence base in Alport Syndrome is small, but there is a very important education gap which it is the group's priority. Our first priorities are to assemble and make available clear information for clinicians caring for patients, as well as for patients themselves including making it clear for Commissioners 'Who should be tested' establish contact details for advice on specific issues make it clear how to approach the group for clinical advice and how to enrol patients in the group. In time this may lead to specialised regional clinics, made possible by recruiting more interested clinicians as the project develops.
- label
- APRT Deficiency Rare Disease Group
- description
- Aims: 1. To collect clinical data on patients with APRT Deficiency in a Registry. This will allow us to: study the causes, natural history and outcome of the condition develop patient cohorts for future studies 2. To collect biological samples for future studies in a Biobank. This will allow us to: identify factors influencing the course of APRT Deficiency determine the role of various genes 3. To develop new methods to measure urinary purine excretion. This will improve tools that allow us to: study the effectiveness of pharmacological and dietary interventions identify factors influencing the course of the condition 4. To work with patient organisations, health care professionals and researchers: to enhance the education and training aspect of this project to develop strategies to increase the awareness and early detection of APRT Deficiency and improve patient outcomes.
- label
Eligibility
Eligibility (as posted)
- Sex
- All
Show eligibility criteria text
* Kidney Rare Disease * Paeds and adults * Eligibility differs for each rare disease group * See: https://ukkidney.org/rare-renal/recruitment
References
Publications (0)
Data not yet available