scholarly journals Current management of patients with RPE65 mutation-associated inherited retinal degenerations (IRDs) in Europe. Results of a multinational survey by the European Vision Institute Clinical Research Network EVICR.net

2021 ◽  
Author(s):  
Birgit Lorenz ◽  
Joana Tavares ◽  
L. Ingeborgh van den Born ◽  
João P. Marques ◽  
Hendrik P.N. Scholl ◽  
...  
Keyword(s):  
Clinical Research ◽  
Research Network ◽  
Current Management ◽  
Clinical Research Network ◽  
Retinal Degenerations

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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