8 recruiting, 3 unknown, 2 completed, 2 withdrawn. .
Follow Patient Registry: new trials by email Literature Review of Patient Registry trials Research Report on Patient Registry
Tick up to 5 trials to compare them side by side (eligibility, arms, endpoints, adverse events) in a Literature Matrix.
| Trial | Phase | Status | Sponsor | Enrollment | Start | Updated |
|---|---|---|---|---|---|---|
| The Spanish National Registry for Myotonic Dystrophy Type 1 Patient Registry - Myotonic Dystrophy 1, DM1 | Recruiting | Fundació Institut Germans Trias i Pujol | 3000 | 2025-06-02 | 2026-02-04 | |
| Natural History Study of Patients with HPDL Mutations Patient Registry, Dry blood spots sampling - Mitochondrial Encephalomyopathies, Hereditary Spastic Paraplegia | Recruiting | University of California, San Diego | 50 | 2023-05-18 | 2025-03-30 | |
| Development and Management of Registry in Patients With Gynecologic Cancer in Korea Patient registry - Cervical Cancer, Endometrial Cancer | Recruiting | Asan Medical Center | 13500 | 2022-10-21 | 2023-06-22 | |
| Global Registry for COL6-related Dystrophies Patient Registry - Bethlem Myopathy, Ullrich Congenital Muscular Dystrophy 1, Digenic, Col6A1/Col6A2 | Unknown | Newcastle-upon-Tyne Hospitals NHS Trust | 1000 | 2018-08-01 | 2023-03-22 | |
| Bergamo Lymphoid Cancer Registry Patient registry - Hodgkin Lymphoma, Non Hodgkin Lymphoma | Recruiting | A.O. Ospedale Papa Giovanni XXIII | 6000 | 2017-03-23 | 2024-03-06 | |
| Environmental Exposure and Neurological Diseases Questionnaire Patient Registry - Amyotrophic Lateral Sclerosis | Completed | Dartmouth-Hitchcock Medical Center | 460 | 2016-10-01 | 2024-05-01 | |
| iCORE: Collaborative Orthopedics Outcomes Registry Patient Registry - Arthroplasty, Replacement, Hip, Arthroplasty, Replacement, Knee | Withdrawn | SCRI Development Innovations, LLC | 2015-04-01 | 2023-12-05 | ||
| Sarah Cannon Outcomes Registry Patient registry - Oncology | Withdrawn | SCRI Development Innovations, LLC | 2014-12-01 | 2023-12-05 | ||
| International GNE Myopathy Patient Registry Patient Registry - GNE Myopathy, Hereditary Inclusion Body Myopathy | Completed | Newcastle University | 430 | 2014-03-01 | 2026-08-17 | |
| Global FKRP Registry Patient Registry - LGMD2I, LGMDR9 | Unknown | Newcastle University | 1000 | 2013-11-01 | 2024-01-30 | |
| The United Kingdom Facioscapulohumeral Muscular Dystrophy Patient Registry Patient Registry - Facioscapulohumeral Muscular Dystrophy | Recruiting | Newcastle University | 1018 | 2013-05-01 | 2026-08-20 | |
| The United Kingdom National Registry for Myotonic Dystrophy Patient Registry - Myotonic Dystrophy | Recruiting | Newcastle University | 900 | 2013-05-01 | 2026-10-06 | |
| Registry of Febrile Neutropenia and Invasive Fungal Infections Patient registry - Hematological Disease, Febrile Neutropenia | Unknown | Chang Gung Memorial Hospital | 100 | 2011-11-01 | 2012-09-12 | |
| UK SMA Patient Registry Patient Registry - Spinal Muscular Atrophy, SMA | Recruiting | Newcastle University | 800 | 2008-07-13 | 2026-08-20 | |
| Preterm Lung Patient Registry Patient Registry - Bronchopulmonary Disease | Recruiting | Boston Children's Hospital | 1500 | 2008-06-01 | 2023-08-14 |
Muscular Dystrophies (2) · Myotonic Dystrophy (2) · Neuromuscular Diseases (2) · Amyotrophic Lateral Sclerosis (1) · Bethlem myopathy (1) · Bulbo-Spinal Atrophy, X-Linked (1) · Distal Myopathies (1) · Distal myopathy, Nonaka type (1) · Endometrial Neoplasms (1) · Fallopian Tube Neoplasms (1) · Febrile Neutropenia (1) · Genetic Diseases, Inborn (1) · Hematologic Diseases (1) · Hodgkin Disease (1) · Leukoencephalopathies (1)
Newcastle University (5) · SCRI Development Innovations, LLC (2) · A.O. Ospedale Papa Giovanni XXIII (1) · Asan Medical Center (1) · Boston Children's Hospital (1) · Chang Gung Memorial Hospital (1) · Dartmouth-Hitchcock Medical Center (1) · Fundació Institut Germans Trias i Pujol (1) · Newcastle-upon-Tyne Hospitals NHS Trust (1) · University of California, San Diego (1)
United Kingdom (6) · United States (5) · Italy (1) · South Korea (1) · Spain (1) · Taiwan (1)
Chiara Marini-Bettolo, MD, PhD (3) · Volker Straub, MD, PhD (2) · Alessandro Rambaldi, MD (1) · Arturo Lopez Castel, Ph.D. (1) · David K DeBoer, MD (1) · Gisela Nogales Gadea, Ph.D. (1) · Jeong-Yeol Park, PhD (1) · Joseph Gleeson (1) · Ming-Chung Wang, M.D. (1) · Richard Geer, MD (1) · Virginia Arechavala-Gomeza, Ph.D. (1) · Volker Straub (1)
PMID 27159994, PMID 28397002, PMID 28662292, PMID 29053898, PMID 30051542, PMID 30185236, PMID 30895627, PMID 33971884, PMID 40368591