Data Management and Sharing Information
The data repository houses the NINDS Division of Clinical Research (DCR) funded studies and trials in neurological areas such as stroke, Parkinson’s disease, migraine, MS, and other neurologic disorders. The data requests and approvals are managed by NINDS. Imaging, biosamples, and other types of data are not supported by this repository. Contact your Program Official to determine if this repository is a good fit for your application.
The following information is specific to the NINDS Archived Clinical Research Datasets. For information on other repositories, please visit the NIH-Supported Data Sharing Resources
NINDS Data Sharing: Information for Applicants and Awardees
For information specific to NINDS-funded applications, please visit the NINDS Data Sharing: Information for Applicants and Awardees page.Data Deposit Timeframe
The applicant must comply with the information in the funding announcement, Notice of Award (NoA) and specific project/network requirements. This is usually submitted at the end of the study/trial. However, requirements may vary, so the applicant is encouraged to review this information with their corresponding PO.Funding support
This repository is owned and operated by NINDS DCR.Support funding duration
NINDS DCR expects to support the data repository for the foreseeable future.The information above is specific to the NINDS Archived Clinical Research Datasets. For information on other repositories and the new NIH Data Management and Sharing Policy, please visit the NIH-Supported Data Sharing Resources page and the Data Management & Sharing Policy Overview.
Applicants are strongly encouraged to contact their Program Official to discuss the selection of the best data repository.
The data from NINDS-supported clinical trials are an important scientific resource, made available to the wider scientific community, while ensuring that the confidentiality and privacy of study participants are protected. NINDS requires all investigators seeking access to data from archived NINDS-supported trials to agree to certain terms and conditions.
NINDS Dataset Citation
It is important to credit the researchers for their work. NINDS asks all data recipients to choose one of the two citation statements when publishing new analysis received datasets.
- This research is based on the National Institute of Neurologic Disease and Stroke’s Archived Clinical Research data (Full Title, PI, and grant number) received from the Archived Clinical Research Dataset web site.
- The (Full Title, PI, and grant number) data and analyses presented in this (manuscript/poster/publication) are based on the research files downloaded from the Archived Clinical Research web site of the National Institute of Neurologic Disease and Stroke.
Procedures for Requesting Archived Datasets
To request a dataset, please complete the NINDS Data Request Form(pdf, 950 KB) (fillable PDF, 929 KB) and send it to the NINDS Clinical Research Liaison at CRLiaison@ninds.nih.gov.
Procedures for Submitting Datasets
If your study was funded by NINDS and you are ready to submit the results, please complete the Archiving Materials Form and Checklist(pdf, 2745 KB) (fillable PDF, 2.7 MB) and send it to the NINDS Clinical Research Liaison at CRLiaison@ninds.nih.gov
Questions?
Please e-mail us at CRLiaison@ninds.nih.gov
Additional NIH/ NINDS data and biorepositories
- Federal Interagency Traumatic Brain Injury Research (FITBIR)
- NINDS Human Cell and Data Repository
- NINDs BioSEND
- NINDS Human Genetics Resource Center
- Database of Genotypes and Phenotypes (dbGaP)
- Parkinson's Disease Biomarkers Program (PDBP)
- NeuroBioBank
- More information for Cell/Tissue/DNA NINDS resources
- NIH Data Sharing Repositories
Archived datasets are available for the following studies:
Trial Acronym | Official Trial Title | Principal Investigator | Primary Disease Category | Secondary Disease Focus (if applicable) | Research Type | Trial Completion Year | Allocation | Phase | Participant Age Group |
---|---|---|---|---|---|---|---|---|---|
ALIAS 1 | A Phase III Randomized Multicenter Clinical Trial Of High-Dose Human Albumin Therapy For Neuroprotection In Acute Ischemic Stroke Part 1 Trial | Myron Ginsberg, MD | Stroke, Ischemic | Interventional | 2010 | Randomized | III | Adult | |
ALIAS 2 | A Phase III Randomized Multicenter Clinical Trial Of High-Dose Human Albumin Therapy For Neuroprotection In Acute Ischemic Stroke Part 2 Trial | Myron Ginsberg, MD | Stroke, Ischemic | Interventional | 2013 | Randomized | III | Adult | |
ARUBA | A Randomized Trial of Unruptured Brain Arteriovenous Malformations | J.P. Mohr, MD | Cerebral Arteriovenous Malformation | Stroke | Intervention | 2015 | Randomized | III | Adult |
ATACH-II | Antihypertensive Treatment of Acute Cerebral Hemorrhage-II : A Phase III Randomized Multicenter Clinical Trial of Blood Pressure Reduction for Hypertension in Acute Intracerebral Hemorrhage | Adnan I. Qureshi, MD | Hemorrhage, Intracerebral | Acute Hypertensive Response | Interventional | 2016 | Randomized | III | Adult |
Ceftriaxone-ALS | Clinical Trial Ceftriaxone in Subjects With Amyotrophic Lateral Sclerosis | Merit E. Cudkowicz, MD | Amyotrophic Lateral Sclerosis | Intervention | 2012 | Randomized | III | Adult | |
CHAMP | Amitriptyline and Topiramate in the Prevention of Childhood Migraine; The Childhood and Adolescent Migraine Prevention Study | Scott W. Powers, PhD and Andrew D. Hershey, MD | Migraine | Interventional | 2016 | Randomized | III | Pediatric | |
CLEAR III | Clot Lysis: Evaluating Accelerated Resolution of Intraventricular Hemorrhage Phase III | Daniel F. Hanley, MD | Hemorrhage, Intraventricular | Interventional | 2016 | Randomized | III | Adult | |
CREST | Carotid Revascularization Endarterectomy Versus Stenting Trial | Thomas G. Brott, MD | Atherosclerosis | Stroke | Interventional | 2016 | Randomized | IV | Adult |
DATATOP | Deprenyl and Tocopherol Anti Oxidative Therapy of Parkinsonism | Ira Shoulson, MD | Parkinson's Disease | Early Stage PD | Interventional | Pre 1990 | Randomized | III | Adult |
DEFUSE 3 | Endovascular Therapy Following Imaging Evaluation for Ischemic Stroke 3 | Gregory Albers, MD | Stroke, Acute | Cerebral Infarction | Interventional | 2017 | Randomized | III | Adult |
ECIC | Extracranial/Intracranial Arterial Anastomosis Study | Henry J. Barnett, MD | Stroke | Interventional | pre 1990 | Randomized | III | Adult | |
ELGAN | Extremely Low Gestational Age Newborn Study | Karl Kuban, MD and T. Michael O'Shea MD | Low Gestational Age Development | Prospective Observational | 2004 | NA | NA | Pediatric/Neonatal | |
LDOPA | Earlier Versus Later Levodopa Therapy in Parkinson's Disease | Stanley Fahn, MD, PhD | Parkinson's Disease | Interventional | 2004 | Randomized | III | Adult | |
ERICH | Ethnic/ Racial Variations of Intracerebral Hemorrhage | Daniel Woo, MD, MS | Hemorrhage, Intracerebral | Observational | 2017 | Case Control | NA | Adult | |
ESSETT | A Multicenter, Randomized, Blinded, Comparative Effectiveness Study of Fosphenytoin, Valproic Acid, or Levetiracetam in the Emergency Department Treatment of Patients With Benzodiazepine-refractory Status Epilepticus | Robert Silbergleit, MD, James Chamberlain. MD, and Jordan Elm, MD | Epilepsy Seizure | Benzodiazepine Refractory Status Epilepticus | Interventional | 2019 | Randomized | III | Adult |
FAST-MAG | Field Administration of Stroke Therapy - Magnesium Trial: A Randomized, Double-Blind, Placebo Controlled Trial of Neuroprotective Magnesium Sulfate Therapy for Acute Stroke Initiated Within 2 Hours of Onset by Paramedics in the Field | Jeffrey L. Saver, MD | Cerebrovascular Accident | Stroke | Interventional | 2013 | Randomized | III | Adult |
Heparinoids-ACI | Heparinoids in the Treatment of Acute Cerebral Infarction | Jose Biller, MD | Stroke, Ischemic | Interventional | pre 1990 | Non Randomized | NA | Adult | |
ICARE | Interdisciplinary Comprehensive Arm Rehab Evaluation Stroke Initiative | Carolee J. Winstein, PhD | Stroke | Interventional | 2014 | Randomized | III | Adult | |
iDEF | Intracerebral Hemorrhage Deferoxamine Trial - iDEF Trial | Magdy Selim, MD | Intracerebral Hemorrhage | Stroke | Interventional | 2018 | Randomized | II | Adult |
IMS III | Interventional Management of Stroke Trial: A Phase III Clinical Trial Examining Whether a Combined Intravenous and Intra-Arterial Approach to Recanalization is Superior to Standard IV Rt-PA Alone | Joseph Broderick, MD | Stroke | Interventional | 2013 | Randomized | III | Adult | |
IRIS | Insulin Resistance Intervention after Stroke Trial | Walter N. Kernan, MD | Stroke | Myocardial Infarction | Interventional | 2015 | Randomized | III | Adult |
LEAPS | Locomotor Experience Applied Post Stroke | Pamela W. Duncan, PhD | Stroke | Interventional | 2012 | Randomized | III | Adult | |
LVT1 | A Dose-Escalation, Safety And Feasibility Study Of Enteral Levetiracetam For Seizure Control In Pediatric Cerebral Malaria | Gretchen L. Birbeck, MD, MPH | Epilepsy Seizure | Cerebral Malaria | Interventional | 2013 | Non Randomized | I / II | Pediatric |
MGTX | A Multi-Center, Single-Blind, Randomized Study Comparing Thymectomy to No Thymectomy in Non-Thymomatous Myasthenia Gravis Patients Receiving Prednisone | Myasthenia Gravis | Interventional | 2015 | Randomized | III | Pediatric | ||
MISTIE | Minimally Invasive Surgery and rtPA for Intracerebral Hemorrhage Evacuation | Daniel F. Hanley, MD | Hemorrhage, Intracerebral | Interventional | 2013 | Randomized | II | Adult | |
MISTIE-III | Minimally Invasive Surgery Plus Rt-PA for ICH Evacuation Phase III | Daniel F. Hanley, MD | Hemorrhage, Intracerebral | Interventional | 2018 | Randomized | III | Adult | |
Naloxone-Stroke | High Dose Intravenous Naloxone for the Treatment of Acute Ischemic Stroke | Harold P. Adams, MD | Stroke | Interventional | pre 1990 | Non Randomized | NA | Adult | |
NASCET | North American Symptomatic Carotid Endarterectomy Trial | Henry J, Barnett, MD | Stroke | Carotid Endarterectomy | Observational | pre 1999 | Case Study | NA | Adult |
NET-PD FS ZONE | A Multi-Center, Double-Blind, Placebo-Controlled Phase II Study of Pioglitazone in Early Parkinson's Disease | Karl Kieburtz, MD, MPH | Parkinson's Disease | Interventional | 2014 | Randomized | II | Adult | |
NET-PD FS1 | A Multi-center, Double-blind, Pilot Study of Minocycline and Creatine in Subjects With Early Untreated Parkinson's Disease | Karl Kieburtz, MD, MPH | Parkinson's Disease | Interventional | 2006 | Randomized | II | Adult | |
NET-PD FS2 | A Multi-center, Double-blind , Pilot Study of CoQ10 and GPI 1485 in Subjects With Early Untreated Parkinson's Disease | Karl Kieburtz, MD, MPH | Parkinson's Disease | Interventional | 2005 | Randomized | II | Adult | |
NET-PD LS1 | A Multicenter, Double-blind, Parallel Group, Placebo Controlled Study of Creatine in Subjects with Treated Parkinson's Disease Long Term Study | Karl Kieburtz, MD, MPH | Parkinson's Disease | Interventional | 2014 | Randomized | III | Adult | |
Nicardipine-AIS | Phase II Study of Nicardipine Treatment of Acute Ischemic Stroke | D. Rosenbaum, MD, J. Zabramski, MD, J. Frey, MD, F. Yatsu, MD, J. Marler, MD, R. Spetzler, MD, and J. Grotta, MD | Stroke, Ischemic | Interventional | pre 1990 | Non Randomized | II | Adult | |
A Phase 2 Randomized, Double-blind, Placebo-controlled Study to Evaluate the Safety, Tolerability and Activity of Ibudilast (MN-166) in Subjects With Progressive Multiple Sclerosis | Robert J Fox, MD | Multiple Sclerosis | Interventional | 2017 | Randomized | II | Adult | ||
NOMAS | Stroke Incidence and Risk Factors in a Tri-ethnic Region | Sacco, Ralph, MD | Stroke | Myocardial Infarction | Observational | 2017 | N/A | Epi. | Adult |
PENUT | Preterm Erythropoietin Neuroprotection Trial | Sandra Juul, MD | Neurodevelopmental Impairment | N/A | Interventional | 2020 | Randomized | III | Neonatal |
PD-DOC PRESTO | A Multicenter, US and Canada, Double Blind, Randomized, Placebo-Controlled, Parallel Group Study, for the Efficacy, Tolerability and Safety of Rasagiline Mesylate in Levodopa Treated Parkinson's Disease Patients With Motor Fluctuations | Ira Shoulson, MD | Parkinson's Disease | Interventional | 2003 | Randomized | III | Adult | |
PD-DOC QE2 | Effects of CoEnzyme Q10 in Early Parkinson's Disease | Clifford Shults, MD | Parkinson's Disease | Interventional | 2003 | Randomized | II | Adult | |
PD-DOC RAPID | A Multicenter, Randomized, Double-Blind, Double Dummy, Parallel Group Study Comparing TV-1203/Carbidopa Dispersible Tablets with Levodopa/Carbidopa Tablets in Advanced Parkinson’s Disease Patients with Motor Fluctuations | Parkinson Group | Parkinson's Disease | Interventional | 2005 | Randomized | III | Adult | |
PD-DOC TEMPO | A Bi-national, Multicenter, Double-Blind, Randomized Study to Evaluate the Safety and Tolerability of Rasagiline Mesylate in Advanced Parkinson's Disease Patients With Motor Fluctuations Treated With Chronic Levodopa/Carbidopa Therapy | Siyu Liu, MD | Parkinson's Disease | Interventional | 2006 | Non Randomized | III | Adult | |
PD-Nigral Grafting | Phase II Double Blind Controlled Trial of Nigral Grafting in Patients with Parkinson's Disease | C. Warren Olanow, MD | Parkinson's Disease | Interventional | 1996 | Randomized | II | Adult | |
POINT | Platelet-Oriented Inhibition in New Transient Ischemic Attack and Minor Ischemic Stroke Trial | S. Claiborne Johnston, MD, PhD | Transient Ischemic Attack | Stroke | Interventional | 2018 | Randomized | III | Adult |
PostCEPT | A Longitudinal Follow-up of the PRECEPT Study Cohort | Roger M. Kurlan, MD | Parkinson's Disease | Observational | 2010 | NA | NA | Adult | |
PRECEPT | A Randomized, Double-Blind, Placebo-Controlled Dose-Finding Study to Assess the Efficacy and Safety of CEP-1347 in Patients with Parkinson's Disease | Ira Shoulson, MD | Parkinson's Disease | Interventional | 2005 | Randomized | II / III | Adult | |
RAMPART | A Double-blind Randomized Clinical Trial of the Efficacy of IM Midazolam Versus IV Lorazepam in the Pre-hospital Treatment of Status Epilepticus by Paramedics | Robert Silbergleit, MD | Status Epilepticus | Interventional | 2011 | Randomized | III | Adult | |
REGARDS | Reasons for Geographic and Racial Differences in Stroke | George. Howard, MD | Cerebrovascular Disorders | Epidemiology | pre 2000 | Cohort | NA | Adult | |
RHAPSODY (NN014) | A Multi-Center, Phase 2 Study Using A Continual Reassessment Method To Determine The Safety And Tolerability Of 3K3A-APC In Combination With tPA, Mechanical Thrombectomy Or Both In Moderate To Severe Acute Ischemic Stroke | Patrick D. Lyden, MD | Stroke | Ischemic Stroke | Interventional | 2017 | Randomized | II | Adult |
SAMMPRIS | Stenting vs. Aggressive Medical Management for Preventing Recurrent Stroke in Intracranial Stenosis | Marc I. Chimowitz, MBChB | Stroke, Ischemic | Transient Ischemic Attack | Interventional | 2013 | Randomized | III | Adult |
SCORE-IT | The CTA Spot Sign Score in Acute Cerebral Hemorrhage. An ATACH-2 Ancillary study | Jonathan Rosand, MD | Stroke | Observational | Randomized | Adult | |||
SHINE | Stroke Hyperglycemia Insulin Network Effort Trial Protocol: A Randomized, Blinded, Efficacy Trial of Standard vs. Intensive Hyperglycemia Management in Acute Stroke | Karen C. Johnston, MD | Stroke, Acute Ischemic | Hyperglycemia | Interventional | 2018 | Randomized | III | Adult |
SMA-NN101 | Spinal Muscular Atrophy Biomarkers Study in the Immediate Postnatal Period of Development | Stephen J Kolb, MD, PhD | Spinal Muscular Atrophy | Observational | 2015 | NA | NA | Pediatric/Neonatal | |
SPARX | Exploratory Study of Different Doses of Endurance Exercise in People with Parkinson's Disease | Margaret Schenkman, PT, PhD | Parkinson's Disease | Interventional | 2016 | Randomized | II | Adult | |
SPS3 | Secondary Prevention of Small Subcortical Strokes Trial | Oscar Benavente, MD | Cerebrovascular Accident | Hypertension | Interventional | 2012 | Randomized | III | Adult |
SRX246 | Tolerability, Safety, and Activity of SRX246 in Irritable Subjects With Huntington's Disease | Michael Brownstein, MD, PhD | Huntington's Disease | Interventional | 2018 | Randomized | II | Adult | |
STEADY-PD III | Phase 3 Double-blind Placebo-controlled Parallel Group Study of Isradipine as a Disease Modifying Agent in Subjects With Early Parkinson Disease | Tanya Simuni, MD, FAAN | Parkinson's Disease | Interventional | 2018 | Randomized | III | Adult | |
Stroke TeleRehab | Telerehabilitation in the Home Versus Therapy In-Clinic for Patients With Stroke: An Assessor-blind, Randomized, Non-inferiority Trial | Steven C. Cramer, MD | Stroke | Interventional | 2018 | Randomized | I / II | Adult | |
SURE-PD3 | A Randomized, Double-blind, Placebo-controlled Trial of Urate-elevating Inosine Treatment to Slow Clinical Decline in Early Parkinson's Disease | Michael A. Schwarzschild, MD, PhD | Parkinson's Disease | Interventional | 2019 | Randomized | III | Adult | |
TNK-S2B | Phase 2B Study of Tenecteplase in Acute Ischemic Stroke | Elliott Clarke Haley, MD | Stroke | Interventional | 2009 | Randomized | II | Adult | |
TOAST | Low Molecular Weight Heparinoid, ORG 10172 (Danaparoid), and Outcome After Acute Ischemic Stroke: A Randomized Controlled Trial | Harold P. Adams, MD | Stroke | Interventional | 1997 | Randomized | III | Adult | |
Topiramate-ALS | Amitriptyline and Tamitriptyline and Topiramate in the Prevention of Childhood Migraine Trial | Scott Powers, MD and Andrew Hershey, MD | Migraine | Amyotrophic Lateral Sclerosis | Intervention | pre 2000 | Randomized | III | Pediatric |
tPA AIS | Tissue Plasminogen Activator for Acute Ischemic Stroke | Steven R. Levine, MD | Stroke, Ischemic | Interventional | 1994 | Randomized | III / IV | Adult | |
VISP | Vitamin Intervention for Stroke Prevention Randomized Controlled Trial | James F. Toole, MD | Stroke | Interventional | 2003 | Randomized | III | Adult | |
WARCEF | Warfarin Versus Aspirin in Reduced Cardiac Ejection Fraction Trial | Heart Disease | Stroke | Interventional | 2014 | Randomized | III | Adult |