| Item | Content |
|---|
| Research project name |
Practical Research Project for Rare / Intractable Diseases |
| Study title |
“Development of medical information integration system for patient education and total life care of congenital heart diseases” |
| Name of principal investigator |
Akiko Chishaki |
| Name of institution of the principal investigator |
Department of Health Sciences, Kyushu University Graduate School of Medical Sciences |
| Target disease |
Adult congenital heart diseases |
| Registry name |
A retrospective study on elucidation of peripartum management issues in adult congenital heart diseases |
| Purpose of registry |
Provision of information to registered patients, Provision of information to physicians in charge, Others (the obtained results are considered useful for development of necessary and sufficient support system for safe and secure pregnancy and delivery of CHD patients.)
|
| Overview of registry |
Since the number of adult patients who underwent complicated cardiac surgery has increased, the number of the patients who need lifelong follow-up due to residual symptoms and secondary illness is also increasing. Moreover, problems including hypertension, arrhythmia, cardiac failure, second surgery and other complications (e.g., infectious endocarditis) have arisen with age. There are also some patients with deteriorated cardiac function due to complications other than cardiac diseases affecting prognosis of the primary disease. For CHD patients with complicated pathological background requiring clinical course of long-term treatment, all healthcare professionals including physicians and nurses should fully understand and assess the patient’s conditions and make efforts to detect any abnormality at early stage. However, it is not clear if sufficient medical care and nursing care are provided based on appropriate information under the current circumstances. Since it is presumed that the number of patients experience pregnancy and delivery will increase with the increasing number of grown-up CHD patients, establishment of perinatal management of mothers and infants is an urgent issue.
|
| Research item |
Name, Sex, Date of birth, Information about the current medical institutions of patients, Past medical history, Complication, History of present illness, History of treatment, Laboratory data, Clinical course, ADL
|
| Contact |
Akiko Chishaki |
| E-mail address |
chishaki●hs.med.kyushu-u.ac.jp |
| Registry URL |
|
* If the E-mail address is shown, replace "●" with "@", please.
