A Nationwide multicenter registry and biobank program for deep phenotyping of idiopathic and hereditary pulmonary arterial hypertension in Korea: the PAH platform for deep phenotyping in Korean subjects (PHOENIKS) cohort
Abstract Background Pulmonary arterial hypertension (PAH) is a progressive, chronic disease without curative treatment. Large registry data of these patient populations have been published, although, phenotypic variants within each subtype of PAH have not been elucidated. As interest towards persona...
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| Format: | Article |
| Language: | English |
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BMC
2019-09-01
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| Series: | Clinical Hypertension |
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| Online Access: | http://link.springer.com/article/10.1186/s40885-019-0126-8 |
| _version_ | 1819161971456475136 |
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| author | Albert Youngwoo Jang Sungseek Kim Su Jung Park Hanul Choi Pyung Chun Oh Seyeon Oh Kyung-Hee Kim Kye Hun Kim Kyunghee Byun Wook-Jin Chung for the PHOENIKS Investigators |
| author_facet | Albert Youngwoo Jang Sungseek Kim Su Jung Park Hanul Choi Pyung Chun Oh Seyeon Oh Kyung-Hee Kim Kye Hun Kim Kyunghee Byun Wook-Jin Chung for the PHOENIKS Investigators |
| author_sort | Albert Youngwoo Jang |
| collection | DOAJ |
| description | Abstract Background Pulmonary arterial hypertension (PAH) is a progressive, chronic disease without curative treatment. Large registry data of these patient populations have been published, although, phenotypic variants within each subtype of PAH have not been elucidated. As interest towards personalized medicine grows, the need for a PAH cohort with a comprehensive understanding of patient phenotypes through multiomics approaches, called deep phenotyping, is on the rise. The PAH Platform for Deep Phenotyping in Korean Subjects (PHOENIKS) cohort is designed to collect clinical data as well as biological specimens for deep phenotyping in patients with idiopathic PAH (IPAH) and heritable PAH (HPAH) in Korea. Methods A total of 17 regional hospitals are currently working on enrolling up to 100 consecutive IPAH/HPAH patients for obtaining clinical data and biological specimens across Korea. The diagnosis of PAH is based on right heart catheterization. All clinical data is stored in a government-based online database. Each participating hospitals collect a whole blood sample from each patient, through which DNA, RNA, serum, plasma, and peripheral blood mononuclear cells will be extracted from the buffy coat layer for further multiomics analysis. Results Not applicable. Conclusions The PHOENIKS cohort is enrolling IPAH and HPAH patients across Korea to determine the prognosis and drug response in different phenotypic variant. The data generated by this cohort are expected to open new doors for personalized medicine in PAH patients of South Korea. Trial registration ClinicalTrials.gov NCT03933579. Registered on May 1st, 2019. |
| first_indexed | 2024-12-22T17:20:49Z |
| format | Article |
| id | doaj.art-f26a37612ddd4a73bd4e6e14d2018d13 |
| institution | Directory Open Access Journal |
| issn | 2056-5909 |
| language | English |
| last_indexed | 2024-12-22T17:20:49Z |
| publishDate | 2019-09-01 |
| publisher | BMC |
| record_format | Article |
| series | Clinical Hypertension |
| spelling | doaj.art-f26a37612ddd4a73bd4e6e14d2018d132022-12-21T18:18:50ZengBMCClinical Hypertension2056-59092019-09-012511610.1186/s40885-019-0126-8A Nationwide multicenter registry and biobank program for deep phenotyping of idiopathic and hereditary pulmonary arterial hypertension in Korea: the PAH platform for deep phenotyping in Korean subjects (PHOENIKS) cohortAlbert Youngwoo Jang0Sungseek Kim1Su Jung Park2Hanul Choi3Pyung Chun Oh4Seyeon Oh5Kyung-Hee Kim6Kye Hun Kim7Kyunghee Byun8Wook-Jin Chung9for the PHOENIKS InvestigatorsGachon Cardiovascular Research Institute, College of Medicine, Gachon UniversityGachon Cardiovascular Research Institute, College of Medicine, Gachon UniversityGachon Cardiovascular Research Institute, College of Medicine, Gachon UniversityGachon Cardiovascular Research Institute, College of Medicine, Gachon UniversityGachon Cardiovascular Research Institute, College of Medicine, Gachon UniversityGachon Cardiovascular Research Institute, College of Medicine, Gachon UniversityDepartment of Cardiology, Sejong General HospitalDepartment of Cardiology, Chonnam University HospitalGachon Cardiovascular Research Institute, College of Medicine, Gachon UniversityGachon Cardiovascular Research Institute, College of Medicine, Gachon UniversityAbstract Background Pulmonary arterial hypertension (PAH) is a progressive, chronic disease without curative treatment. Large registry data of these patient populations have been published, although, phenotypic variants within each subtype of PAH have not been elucidated. As interest towards personalized medicine grows, the need for a PAH cohort with a comprehensive understanding of patient phenotypes through multiomics approaches, called deep phenotyping, is on the rise. The PAH Platform for Deep Phenotyping in Korean Subjects (PHOENIKS) cohort is designed to collect clinical data as well as biological specimens for deep phenotyping in patients with idiopathic PAH (IPAH) and heritable PAH (HPAH) in Korea. Methods A total of 17 regional hospitals are currently working on enrolling up to 100 consecutive IPAH/HPAH patients for obtaining clinical data and biological specimens across Korea. The diagnosis of PAH is based on right heart catheterization. All clinical data is stored in a government-based online database. Each participating hospitals collect a whole blood sample from each patient, through which DNA, RNA, serum, plasma, and peripheral blood mononuclear cells will be extracted from the buffy coat layer for further multiomics analysis. Results Not applicable. Conclusions The PHOENIKS cohort is enrolling IPAH and HPAH patients across Korea to determine the prognosis and drug response in different phenotypic variant. The data generated by this cohort are expected to open new doors for personalized medicine in PAH patients of South Korea. Trial registration ClinicalTrials.gov NCT03933579. Registered on May 1st, 2019.http://link.springer.com/article/10.1186/s40885-019-0126-8Pulmonary arterial hypertensionPrecision medicineBlood bank, registries |
| spellingShingle | Albert Youngwoo Jang Sungseek Kim Su Jung Park Hanul Choi Pyung Chun Oh Seyeon Oh Kyung-Hee Kim Kye Hun Kim Kyunghee Byun Wook-Jin Chung for the PHOENIKS Investigators A Nationwide multicenter registry and biobank program for deep phenotyping of idiopathic and hereditary pulmonary arterial hypertension in Korea: the PAH platform for deep phenotyping in Korean subjects (PHOENIKS) cohort Clinical Hypertension Pulmonary arterial hypertension Precision medicine Blood bank, registries |
| title | A Nationwide multicenter registry and biobank program for deep phenotyping of idiopathic and hereditary pulmonary arterial hypertension in Korea: the PAH platform for deep phenotyping in Korean subjects (PHOENIKS) cohort |
| title_full | A Nationwide multicenter registry and biobank program for deep phenotyping of idiopathic and hereditary pulmonary arterial hypertension in Korea: the PAH platform for deep phenotyping in Korean subjects (PHOENIKS) cohort |
| title_fullStr | A Nationwide multicenter registry and biobank program for deep phenotyping of idiopathic and hereditary pulmonary arterial hypertension in Korea: the PAH platform for deep phenotyping in Korean subjects (PHOENIKS) cohort |
| title_full_unstemmed | A Nationwide multicenter registry and biobank program for deep phenotyping of idiopathic and hereditary pulmonary arterial hypertension in Korea: the PAH platform for deep phenotyping in Korean subjects (PHOENIKS) cohort |
| title_short | A Nationwide multicenter registry and biobank program for deep phenotyping of idiopathic and hereditary pulmonary arterial hypertension in Korea: the PAH platform for deep phenotyping in Korean subjects (PHOENIKS) cohort |
| title_sort | nationwide multicenter registry and biobank program for deep phenotyping of idiopathic and hereditary pulmonary arterial hypertension in korea the pah platform for deep phenotyping in korean subjects phoeniks cohort |
| topic | Pulmonary arterial hypertension Precision medicine Blood bank, registries |
| url | http://link.springer.com/article/10.1186/s40885-019-0126-8 |
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