Von-Hippel Lindau associated RCC
Conditions
Interventions
None listed
Sponsors
Tokudome Takuto
Eligibility
Inclusion criteria
Inclusion criteria: 1.Patients with confirmed diagnosis of VHL disease after the year 1980. 2.Patients with a confirmed diagnosis of VHL-RCC and/or VHL associated renal cysts based on established diagnostic criteria. 3.Age 18 or older at the time of registration. 4.Availability of clinical data, including patients' medical records, diagnostic imaging reports, treatment history surgical/pathology reports, and treatment history.
Exclusion criteria
Exclusion criteria: 1.Patients who have been diagnosed as VHL but do not have VHL-associated renal lesions (RCC and/or Renal cysts) to date. 2.Investigator determined the patient to be ineligible due to incomplete medical records at the time of enrolment. (e.g. Incomplete medical records might be observed for patients who recently transferred to the site without diagnosis or treatment records, or for patients who attended the site only for consultation or second opinion.)
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Patients backgrounds; Date of birth, Gender, VHL family history, VHL genetic testing history, Smoking history, Place of residence , Treatment history for VHL-RCC, Treatment history for VHL extra-renal lesions. At diagnosis of VHL disease/VHL-RCC; Date or Age at VHL diagnosis, VHL diagnositic criteria, Trigger to VHL disease diagnosis/consultation, Height/Weight, PS/KPS, Patient condition (Disabilities), Comorbidity, Oral medication, VHL related renal lesions, Pathological information on VHL-RCC/extra-renal lesions. History of VHL-RCC treatments; (at each treatment) Date or Age, Height/Weight, PS/KPS, Comorbidity, VHL renal/extrarenal lesions, Treatment type, Surgery method/type, Result of surgery. Laboratory data; Serum Cr, eGFR, Hb (at enrollment, at diagnosis of VHL disease/VHL-RCC, at each treatment for) VHL-RCC) | — |
Contacts
Public ContactYuka Matsumoto
EPS Corporation
Outcome results
None listed