Patient Registry

OTHER15 trials

Sponsors

Boston Children's Hospital, Chang Gung Memorial Hospital, SCRI Development Innovations, LLC, Dartmouth-Hitchcock Medical Center, A.O. Ospedale Papa Giovanni XXIII

Conditions

Amyotrophic Lateral SclerosisArthroplasty, Replacement, HipArthroplasty, Replacement, KneeBTHLM1Bethlem MyopathyBethlem Myopathy 1, Autosomal RecessiveBronchopulmonary DiseaseCervical Cancer

Unknown Phase

Preterm Lung Patient Registry

RecruitingNCT00951366

Boston Children's HospitalBronchopulmonary Disease

Start: 2008-06-30End: 2099-01-01Target: 1500Updated: 2023-08-14

Registry of Febrile Neutropenia and Invasive Fungal Infections

Chang Gung Memorial HospitalFebrile Neutropenia, Fungal Infections, Hematological Disease

Start: 2011-11-30End: 2013-08-31Target: 100Updated: 2012-09-12

Sarah Cannon Outcomes Registry

WithdrawnNCT02356822

SCRI Development Innovations, LLCOncology

Start: 2014-12-31End: 2024-12-31Updated: 2023-12-05

iCORE: Collaborative Orthopedics Outcomes Registry

WithdrawnNCT02422667

SCRI Development Innovations, LLCArthroplasty, Replacement, Hip, Arthroplasty, Replacement, Knee

Start: 2015-04-30End: 2017-04-30Updated: 2023-12-05

Environmental Exposure and Neurological Diseases Questionnaire

CompletedNCT02916966

Dartmouth-Hitchcock Medical CenterAmyotrophic Lateral Sclerosis

Start: 2016-10-31End: 2023-09-30Updated: 2024-05-01

Bergamo Lymphoid Cancer Registry

RecruitingNCT03131531

A.O. Ospedale Papa Giovanni XXIIIHodgkin Lymphoma, Myeloma, Non Hodgkin Lymphoma

Start: 2017-03-23End: 2037-03-23Target: 6000Updated: 2024-03-06

Global FKRP Registry

RecruitingNCT04001595

Newcastle UniversityCongenital Muscular Dystrophy, FKRP Gene Mutation, LGMD2I +4

Start: 2013-11-30End: 2025-12-31Target: 1000Updated: 2024-01-30

The United Kingdom Facioscapulohumeral Muscular Dystrophy Patient Registry

RecruitingNCT04001582

Newcastle UniversityFacioscapulohumeral Muscular Dystrophy

Start: 2013-05-01End: 2040-01-01Target: 1018Updated: 2026-08-20

The United Kingdom National Registry for Myotonic Dystrophy

RecruitingNCT04003363

Newcastle UniversityMyotonic Dystrophy

Start: 2013-05-31End: 2030-12-31Target: 900Updated: 2023-12-04

International GNE Myopathy Patient Registry

CompletedNCT04009226

Newcastle UniversityGNE Myopathy, Hereditary Inclusion Body Myopathy

Start: 2014-03-01End: 2021-12-01Target: 430Updated: 2026-08-17

Global Registry for COL6-related Dystrophies

Newcastle-upon-Tyne Hospitals NHS TrustBethlem Myopathy, Bethlem Myopathy 1, Autosomal Recessive, BTHLM1 +4

Start: 2018-08-01End: 2024-10-31Target: 1000Updated: 2023-03-22

UK SMA Patient Registry

RecruitingNCT04292574

Newcastle UniversitySMA, Spinal Muscular Atrophy

Start: 2008-07-13End: 2040-01-01Target: 800Updated: 2026-08-20

Natural History Study of Patients with HPDL Mutations

RecruitingNCT05848271

University of California, San DiegoGenetic Disease, Hereditary Spastic Paraplegia, Mitochondrial Encephalomyopathies +4

Start: 2023-05-18End: 2027-12-31Target: 50Updated: 2025-03-30

Development and Management of Registry in Patients With Gynecologic Cancer in Korea

RecruitingNCT05912972

Asan Medical CenterCervical Cancer, Endometrial Cancer, Fallopian Tube Cancer +2

Start: 2022-10-21End: 2027-10-21Target: 13500Updated: 2023-06-22

The Spanish National Registry for Myotonic Dystrophy Type 1

RecruitingNCT07385443

Fundació Institut Germans Trias i PujolDM1, Myotonic Dystrophy 1, Myotonic Dystrophy, Congenital +2

Start: 2025-06-02End: 2026-12-31Target: 3000Updated: 2026-02-04

Related Papers

<i>HPDL</i> Variant Type Correlates With Clinical Disease Onset and Severity

Annals of Clinical and Translational Neurology2025-05-144 citations

GMALL B ALL/NHL 2002 Protocol Yields High Response Rates and Durable Responses in High-Grade B Cell Lymphoma: A Retrospective, Single-Center Study

Blood2024-11-05

PS1257 LYMPHOCYTE TO MONOCYTE RATIO (LMR) PREDICTS PROGRESSION‐FREE SURVIVAL INDEPENDENTLY FROM FLIPI AND IS USEFUL IN IDENTIFYING PATIENTS WITH EARLY DISEASE PROGRESSION

HemaSphere2019-06-01