Unique ID issued by UMIN | UMIN000047382 |
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Receipt number | R000054043 |
Scientific Title | Patient registry of hereditary motor and sensory neuropathy with proximal dominant involvement (HMSN-P) |
Date of disclosure of the study information | 2022/04/04 |
Last modified on | 2024/04/05 09:36:50 |
Patient registry of hereditary motor and sensory neuropathy with proximal dominant involvement (HMSN-P)
HOPE-net
Patient registry of hereditary motor and sensory neuropathy with proximal dominant involvement (HMSN-P)
HOPE-net
Japan |
Hereditary motor and sensory neuropathy with proximal dominant involvement (HMSN-P)
Neurology |
Others
YES
Investigate the natural, biomarker, clinical and therapeutic history of HMSN-P patients by cross-sectional and prospective study
Others
Cross-sectional study
Prospective cohort study
Not applicable
Mortality and cause of death
Timing of introduction of invasive artificial ventilation
Time to cannot walk on its own
ALS Functional Rating Scale (ALSFRS-R)
Modified Ranking Scale (mRS)
EQ-5D-5L score
Observational
Not applicable |
Not applicable |
Male and Female
(1) HMSN-P diagnosed or suspected case
(2) Patients signed the informed consent document
Patients considered unsuitable for participation in the study by the investigator.
100
1st name | Yoshihisa |
Middle name | |
Last name | Yamano |
St. Marianna University School of Medicine
Department of Neurology
216-8511
2-16-1 Sugao, Miyamae-ku, Kawasaki, Kanagawa, 216-8512 Japan
044-977-8111
yyamano@marianna-u.ac.jp
1st name | Naoko |
Middle name | |
Last name | Yagishita |
Institute of Medical Science
None
216-8512
2-16-1 Sugao, Miyamae-ku, Kawasaki, Kanagawa, 216-8512 Japan
044-977-8111
yagi@marianna-u.ac.jp
St. Marianna University School of Medicine
None
Self funding
St. Marianna University School of Medicine
2-16-1 Sugao, Miyamae-ku, Kawasaki, Kanagawa, 216-8512 Japan
044-977-8111
k-sienbu.mail@marianna-u.ac.jp
NO
聖マリアンナ医科大学(神奈川県)
2022 | Year | 04 | Month | 04 | Day |
Unpublished
Open public recruiting
2021 | Year | 12 | Month | 10 | Day |
2022 | Year | 03 | Month | 01 | Day |
2022 | Year | 03 | Month | 01 | Day |
2035 | Year | 12 | Month | 31 | Day |
Design: cohort study
2022 | Year | 04 | Month | 04 | Day |
2024 | Year | 04 | Month | 05 | Day |
Value
https://center6.umin.ac.jp/cgi-open-bin/ctr_e/ctr_view.cgi?recptno=R000054043
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