scholarly journals Characteristics of 24,516 Patients Diagnosed with COVID-19 Illness in a National Clinical Research Network: Results from PCORnet

2020 ◽  
Author(s):  
Jason P Block ◽  
Keith A. Marsolo ◽  
Kshema Nagavedu ◽  
L Charles Bailey ◽  
Henry Cruz ◽  
...  
Keyword(s):  
Emergency Department ◽  
Clinical Research ◽  
Care Setting ◽  
Hospital Setting ◽  
The United States ◽  
Viral Pneumonia ◽  
Research Network ◽  
Ambulatory Setting ◽  
Mechanical Ventilators ◽  
Clinical Research Network

Background: National data from diverse institutions across the United States are critical for guiding policymakers as well as clinical and public health leaders. This study characterized a large national cohort of patients diagnosed with COVID-19 in the U.S., compared to patients diagnosed with viral pneumonia and influenza. Methods and Findings: We captured cross-sectional information from 36 large healthcare systems in 29 U.S. states, participating in PCORnet, the National Patient-Centered Clinical Research Network. Patients included were those diagnosed with COVID-19, viral pneumonia and influenza in any care setting, starting from January 1, 2020. Using distributed queries executed at each participating institution, we acquired information for patients on care setting (any, ambulatory, inpatient or emergency department, mechanical ventilator), age, sex, race, state, comorbidities (assessed with diagnostic codes), and medications used for treatment of COVID-19 (hydroxychloroquine with or without azithromycin; corticosteroids, anti-interleukin-6 agents). During this time period, 24,516 patients were diagnosed with COVID-19, with 42% in an emergency department or inpatient hospital setting; 79,639 were diagnosed with viral pneumonia (53% inpatient/ED) and 163,984 with influenza (41% inpatient/ED). Among COVID-19 patients, 68% were 20 to <65 years of age, with more of the hospitalized/ED patients in older age ranges (23% 65+ years vs. 12% for COVID-19 patients in the ambulatory setting). Patients with viral pneumonia were of a similar age, and patients with influenza were much younger. Comorbidities were common, especially for patients with COVID-19 and viral pneumonia, with hypertension (32% for COVID-19 and 46% for viral pneumonia), arrhythmias (20% and 35%), and pulmonary disease (19% and 40%) the most common. Hydroxychloroquine was used in treatment for 33% and tocilizumab for 11% of COVID-19 patients on mechanical ventilators (25% received azithromycin as well). Conclusion and Relevance: PCORnet leverages existing data to capture information on one of the largest U.S. cohorts to date of patients diagnosed with COVID-19 compared to patients diagnosed with viral pneumonia and influenza.

Red Blood Cell Allo and Autoantibody Production in Patients in the Thalassemia Clinical Research Network.

Blood ◽  
2005 ◽  
Vol 106 (11) ◽  
pp. 1890-1890 ◽  
Author(s):  
Melody J. Cunningham ◽  
Eric A. Macklin ◽  
Sylvia T. Singer ◽  
Catherine S. Manno ◽  
Patricia J. Giardina ◽  
...  
Keyword(s):  
Blood Cell ◽  
Clinical Research ◽  
Red Blood Cell ◽  
Thalassemia Major ◽  
The United States ◽  
Research Network ◽  
Cross Sectional ◽  
Autoantibody Production ◽  
Clinical Research Network ◽  
Before And After

Abstract Introduction: The development of alloantibodies and/or autoantibodies, complicates red blood cell (RBC) crossmatching, shortens red cell survival, delays provision of safe transfusion and may accelerate tissue iron loading. Little is known about the incidence of alloimmunization or its inciting factors, essential data for strategies to provide optimal transfusion. Aim: To determine the frequency of RBC allo- and autoantibodies in patients with thalassemia major (TM) who are regularly transfused and whether there is an association of RBC antibodies and age at initiation of transfusion, duration of regular transfusion, splenectomy status, transfusion of leukoreduced blood or ethnicity. Methods: We utilized a cross-sectional registry of the Thalassemia Clinical Research Network (TCRN), an NHLBI-funded consortium of patients with thalassemia followed in Canada and the United States, for data on allo- and autoantibodies, splenectomy status, ethnicity and compared rates before and after 1990, when the first leukoreduction filters were introduced. Results: 502 of the 836 subjects enrolled in the TCRN registry had been regularly transfused and reported allo- and autoimmunization status. Allo- and autoantibodies were reported in 104 (21%) and 46 (9.2%) subjects, respectively. Presence of both were reported in 26 (5.2%) individuals. The rate of alloimmunization was higher among individuals who initiated transfusions prior to 1990 (27%) versus those who initiated transfusion after that date (12.5%, p<.001). The rate of autoimmunization did not differ significantly between these two cohorts (pre-1990 11.2%, post-1990 6.3%, p=.08). Mean age at time of registry entry in these cohorts was 25.8±8.4 yrs and 9.3±6.8 yrs, respectively. Duration of regular transfusion was associated with allo- (p<.001) but not autoantibodies (p=.08). Initiation of transfusions before or after 1990 and duration of regular transfusions are confounded. Consequently, the differences in alloimmunization rates may reflect the use of leukoreduction or the total years of exposure to transfusions. Splenectomy was associated with a higher rate of alloantibodies among subjects in the post-1990 but not the pre-1990 cohort. Alloantibodies were reported in 14 of 49 (29%) splenectomized subjects who started transfusion after 1990, and only 12 of 159 (7.6%) nonsplenectomized subjects (p<.001). Rates of alloimmunization did not differ among races after controlling for age. Age at initiation of regular transfusions was not associated with allo- or autoimmunization. Rates of alloimmunization differed among treatment centers, possibly related to varying procedures for phenotypic antigen matching of RBCs. Conclusions: RBC allo- and autoimmunization continue to develop in chronically transfused thalassemia patients although the availability of leukoreduced RBC may have resulted in the lower immunization rate observed in younger patients. The risk for RBC immunization that splenectomy imparts is concerning and deserves closer analysis.

scholarly journals Use of the Asthma Control Questionnaire by the Asthma Clinical Research Network

2011 ◽  
Vol 38 (5) ◽  
pp. 1242-1242
Author(s):  
M. J. Walter ◽  
M. Castro ◽  
E. Israel ◽  
C. A. Sorkness ◽  
Keyword(s):  
Clinical Research ◽  
Asthma Control ◽  
Research Network ◽  
Asthma Control Questionnaire ◽  
Clinical Research Network

Treatment strategies for hydrocephalus related to Dandy-Walker syndrome: evaluating procedure selection and success within the Hydrocephalus Clinical Research Network

2021 ◽  
pp. 1-9
Author(s):  
Aaron M. Yengo-Kahn ◽  
John C. Wellons ◽  
Todd C. Hankinson ◽  
Jason S. Hauptman ◽  
Eric M. Jackson ◽  
...  
Keyword(s):  
Clinical Research ◽  
Treatment Success ◽  
Treatment Strategies ◽  
Research Network ◽  
Csf Shunt ◽  
Third Ventriculostomy ◽  
Separate Analysis ◽  
Complication Rates ◽  
Primary Analysis ◽  
Clinical Research Network

OBJECTIVE Treating Dandy-Walker syndrome–related hydrocephalus (DWSH) involves either a CSF shunt-based or endoscopic third ventriculostomy (ETV)–based procedure. However, comparative investigations are lacking. This study aimed to compare shunt-based and ETV-based treatment strategies utilizing archival data from the Hydrocephalus Clinical Research Network (HCRN) registry. METHODS A retrospective review of prospectively collected and maintained data on children with DWSH, available from the HCRN registry (14 sites, 2008–2018), was performed. The primary outcome was revision-free survival of the initial surgical intervention. The primary exposure was either shunt-based (i.e., cystoperitoneal shunt [CPS], ventriculoperitoneal shunt [VPS], and/or dual-compartment) or ETV-based (i.e., ETV alone or with choroid plexus cauterization [CPC]) initial surgical treatment. Primary analysis included multivariable Cox proportional hazards models. RESULTS Of 8400 HCRN patients, 151 (1.8%) had DWSH. Among these, the 102 patients who underwent shunt placement (79 VPSs, 16 CPSs, 3 other, and 4 multiple proximal catheter) were younger (6.6 vs 18.8 months, p < 0.001) and more frequently had 1 or more comorbidities (37.3% vs 14.3%, p = 0.005) than the 49 ETV-treated children (28 ETV-CPC). Fifty percent of the shunt-based and 51% of the ETV-based treatments failed. Notably, 100% (4/4) of the dual-compartment shunts failed. Adjusting for age, baseline ventricular size, and comorbidities, ETV-based treatment was not significantly associated with earlier failure compared with shunt-based treatment (HR for failure 1.32, 95% CI 0.77–2.26; p = 0.321). Complication rates were low: 4.9% and 6.1% (p = 0.715) for shunt- and ETV-based procedures, respectively. There was no difference in survival between ETV-CPC– and ETV-based treatment when adjusting for age (HR for failure 0.86, 95% CI 0.29–2.55, p = 0.783). CONCLUSIONS In this North American, multicenter, prospective database review, shunt-based and ETV-based primary treatment strategies of DWSH appear similarly durable. Pediatric neurosurgeons can reasonably consider ETV-based initial treatment given the similar durability and the low complication rate. However, given the observational nature of this study, the treating surgeon might need to consider subgroups that were too small for a separate analysis. Very young children with comorbidities were more commonly treated with shunts, and older children with fewer comorbidities were offered ETV-based treatment. Future studies may determine preoperative characteristics associated with ETV treatment success in this population.

scholarly journals Implementing a hash-based privacy-preserving record linkage tool in the OneFlorida clinical research network

JAMIA Open ◽  
2019 ◽  
Vol 2 (4) ◽  
pp. 562-569 ◽  
Author(s):  
Jiang Bian ◽  
Alexander Loiacono ◽  
Andrei Sura ◽  
Tonatiuh Mendoza Viramontes ◽  
Gloria Lipori ◽  
...  
Keyword(s):  
Clinical Research ◽  
Open Source ◽  
Real World ◽  
Record Linkage ◽  
Gold Standard ◽  
Privacy Preserving ◽  
Research Network ◽  
Clinical Research Network ◽  
Real World Setting ◽  
Hash Codes

Abstract Objective To implement an open-source tool that performs deterministic privacy-preserving record linkage (RL) in a real-world setting within a large research network. Materials and Methods We learned 2 efficient deterministic linkage rules using publicly available voter registration data. We then validated the 2 rules’ performance with 2 manually curated gold-standard datasets linking electronic health records and claims data from 2 sources. We developed an open-source Python-based tool—OneFL Deduper—that (1) creates seeded hash codes of combinations of patients’ quasi-identifiers using a cryptographic one-way hash function to achieve privacy protection and (2) links and deduplicates patient records using a central broker through matching of hash codes with a high precision and reasonable recall. Results We deployed the OneFl Deduper (https://github.com/ufbmi/onefl-deduper) in the OneFlorida, a state-based clinical research network as part of the national Patient-Centered Clinical Research Network (PCORnet). Using the gold-standard datasets, we achieved a precision of 97.25∼99.7% and a recall of 75.5%. With the tool, we deduplicated ∼3.5 million (out of ∼15 million) records down to 1.7 million unique patients across 6 health care partners and the Florida Medicaid program. We demonstrated the benefits of RL through examining different disease profiles of the linked cohorts. Conclusions Many factors including privacy risk considerations, policies and regulations, data availability and quality, and computing resources, can impact how a RL solution is constructed in a real-world setting. Nevertheless, RL is a significant task in improving the data quality in a network so that we can draw reliable scientific discoveries from these massive data resources.

scholarly journals Recurrent Laryngeal Nerve Palsy After Cervical Spine Surgery: A Multicenter AOSpine Clinical Research Network Study

2017 ◽  
Vol 7 (1_suppl) ◽  
pp. 53S-57S ◽  
Author(s):  
Ziya L. Gokaslan ◽  
Mohamad Bydon ◽  
Rafael De la Garza-Ramos ◽  
Zachary A. Smith ◽  
Wellington K. Hsu ◽  
...  
Keyword(s):  
Cervical Spine ◽  
Clinical Research ◽  
Recurrent Laryngeal Nerve ◽  
Spine Surgery ◽  
Nerve Palsy ◽  
Recurrent Laryngeal Nerve Palsy ◽  
Laryngeal Nerve ◽  
Research Network ◽  
Clinical Research Network ◽  
Cervical Spine Surgery
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