| Item | Content |
|---|
| Research project name |
Research Project on the Rare / Intractable Disease |
| Study title |
Establishment of cross-sectional medical system related to neurocutaneous syndrome |
| Name of principal investigator |
Chikako Nishigori |
| Name of institution of the principal investigator |
Kobe University Graduate school of Medicine |
| Target disease |
Xeroderma pigmentosum |
| Registry name |
|
| Purpose of registry |
Survey of natural history, Investigation into the number or the distribution of patients, Epidemiological study, Patient recruitment for clinical trials or other interventional studies, Genetic analysis study, Provision of information to physicians in charge
|
| Overview of registry |
Of the patients at Kobe University Hospital and patients whom diagnosis was requested, only patients who were diagnosed with XP were enrolled, and patient information was entered to the registry for understanding of pathology.
|
| Research item |
Name, Sex, Date of birth, Family history, Past medical history, Complication, History of present illness, History of treatment, Laboratory data, Degree of severity, Prognosis, Cause of death
|
| Contact |
Chikako Nishigori |
| E-mail address |
chikako●med.kobe-u.ac.jp |
| Registry URL |
|
* If the E-mail address is shown, replace "●" with "@", please.
