The role of medical registries, potential applications and limitations

Pop, Bogdan; Fetică, Bogdan; Blaga, Mihaiela L.; Trifa, Adrian P.; Achimaș-Cădariu, Patriciu; Vlad, Cătălin; Achimaş-Cadariu, Andrei

doi:10.15386/cjmed-1015

Cited by 53 publications

(63 citation statements)

References 50 publications

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“…A number of limitations in existing registries have been researched and identified. These include privacy concerns, the need for anonymity and informed consent, lack of stakeholder feedback and lack of awareness of existing standards and standard processes when building or maintaining a patient registry [16][17][18][19][20][21]. In addition, there are also examples of limited adoption of registries by certain socio-demographic groups [22] that are linked to the language barriers, level of technology adoption and geographical locations.…”

Section: Limitations Of Current Registriesmentioning

confidence: 99%

“…In addition, there are also examples of limited adoption of registries by certain socio-demographic groups [22] that are linked to the language barriers, level of technology adoption and geographical locations. Low-quality data and a lack of awareness of data standards were also common themes in existing medical registry design approaches [16,20,21].…”

Section: Limitations Of Current Registriesmentioning

confidence: 99%

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Engineering Requirements of a Herpes Simplex Virus Patient Registry: Discovery Phase of a Real-World Evidence Platform to Advance Pharmacogenomics and Personalized Medicine

Surodina¹,

Lam

Cock

et al. 2019

Biomedicines

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Comprehensive pharmacogenomic understanding requires both robust genomic and demographic data. Patient registries present an opportunity to collect large amounts of robust, patient-level data. Pharmacogenomic advancement in the treatment of infectious diseases is yet to be fully realised. Herpes simplex virus (HSV) is one disease for which pharmacogenomic understanding is wanting. This paper aims to understand the key factors that impact data collection quality for medical registries and suggest potential design features of an HSV medical registry to overcome current constraints and allow for this data to be used as a complement to genomic and clinical data to further the treatment of HSV. This paper outlines the discovery phase for the development of an HSV registry with the aim of learning about the users and their contexts, the technological constraints and the potential improvements that can be made. The design requirements and user stories for the HSV registry have been identified for further alpha phase development. The current landscape of HSV research and patient registry development were discussed. Through the analysis of the current state of the art and thematic user analysis, potential design features were elucidated to facilitate the collection of high-quality, robust patient-level data which could contribute to advances in pharmacogenomic understanding and personalised medicine in HSV. The user requirements specification for the development of an HSV registry has been summarised and implementation strategies for the alpha phase discussed.

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Section: Limitations Of Current Registriesmentioning

confidence: 99%

Section: Limitations Of Current Registriesmentioning

confidence: 99%

Engineering Requirements of a Herpes Simplex Virus Patient Registry: Discovery Phase of a Real-World Evidence Platform to Advance Pharmacogenomics and Personalized Medicine

Surodina¹,

Lam

Cock

et al. 2019

Biomedicines

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show abstract

“…22 The RECOVER registry may be unique because it includes ED patients who are both SARS-CoV-2 positive, as well as those who had suspected COVID-19, but who have negative diagnostic testing for SARS-CoV-2. This methodology specifically addresses the current critical need for a data set to derive and test-pretest probability and exclusionary rules for COVID- 19, as has been done with many other diseases, notably pulmonary embolism. 23 The proposed CORC rule can be used to guide the decision whether to test or not, and assuming that accurate likelihood ratios can be produced for diagnostic tests for SARS-CoV-2, the pretest probability criteria derived from this work will allow an estimate of post-test probability.…”

Section: Discussionmentioning

confidence: 99%

“…This registry is restricted to ED patients who received a SARS-CoV- Although registries can show associations, they have limited ability to establish causal inference. 19…”

Section: Limitationsmentioning

confidence: 99%

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Multicenter registry of United States emergency department patients tested for SARS‐CoV‐2

et al. 2020

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This paper summarizes the methodology for the registry of suspected COVID-19 in emergency care (RECOVER), a large clinical registry of patients from 155 United States (US) emergency departments (EDs) in 27 states tested for SARS-CoV-2 from March-September 2020. The initial goals are to derive and test: (1) a pretest probability instrument for prediction of SARS-CoV-2 test results, and from this instrument, a set of simple criteria to exclude COVID-19 (the COVID-19 Rule-Out Criteria-the CORC rule), and (2) a prognostic instrument for those with COVID-19. Patient eligibility included any ED patient tested for SARS-CoV-2 with a nasal or oropharyngeal swab. Abstracted clinical data included 204 variables representing the earliest manifestation of infection, including week of testing, demographics, symptoms, exposure risk, past medical history, test results, admission status, and outcomes 30 days later. In addition to the primary goals, the registry will provide a vital platform for characterizing the course, epidemiology, clinical features, and prognosis of patients tested for COVID-19 in the ED setting.

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Cutaneous Neurofibromas and Quality of Life in Adults With Neurofibromatosis Type 1

Lin,

Yao,

Vera

et al. 2024

JAMA Dermatol

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ImportanceThere is a burgeoning interest in therapeutic development for cutaneous neurofibromas (cNFs), a major cause of morbidity in persons with neurofibromatosis type 1 (NF1). To determine meaningful clinical trial outcomes, deeper understanding is needed regarding how cNFs are associated with quality of life (QoL). However, this understanding has been hampered by challenges in recruiting participants with this rare genetic disease.ObjectiveTo develop a large, crowdsourced validated registry of persons with NF1 and determine the association of specific cNF features with QoL, pain, and itch.Design, Setting, and ParticipantsFrom May 2021 to December 2023, a decentralized platform was developed and recruited persons 40 years or older with NF1 and at least 1 cNF from 49 states and 12 countries, who provided clinical survey data, detailed photographs, and genetic sequencing data. Photographs from 583 participants were scored on 12 features of cNFs, including general severity, number, size, facial severity, color, and subtypes.ExposurecNF features derived from participant-supplied photographs.Main Outcomes and MeasuresTotal Skindex scores and subdomain scores (symptoms, emotion, function, pain, and itch).ResultsOf 583 participants, 384 (65.9%) were female, and the mean (range) age was 51.7 (40.0-83.0) years. Female sex, general severity, number, size, and facial severity of cNFs were negatively associated with QoL, as demonstrated by increased total Skindex scores. QoL had the largest association with the number of cNFs and presence of facial cNFs. Increasing number of cNFs was associated with worse QoL, and even individuals with a low cNF burden (&lt;10 total cNFs) experienced a decrease in QoL.Conclusions and RelevanceThe results of this study suggest that reducing cNF number, particularly on the face, may be associated with improved QoL in individuals with NF1. In addition, early intervention before the development of numerous tumors may lead to the highest benefit in QoL. These data potentially provide insight into which individuals and cNF tumors may benefit most from therapy and highlights the utility of a completely decentralized, photograph-validated and age-controlled study for rare genetic disease. This cohort will allow analysis of disease and tumor heterogeneity after full phenotypic expression is achieved in NF1 and potentially serves as an example in its design for other rare diseases that struggle from poor recruitment.

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The role of medical registries, potential applications and limitations

Cited by 53 publications

References 50 publications

Engineering Requirements of a Herpes Simplex Virus Patient Registry: Discovery Phase of a Real-World Evidence Platform to Advance Pharmacogenomics and Personalized Medicine

Engineering Requirements of a Herpes Simplex Virus Patient Registry: Discovery Phase of a Real-World Evidence Platform to Advance Pharmacogenomics and Personalized Medicine

Multicenter registry of United States emergency department patients tested for SARS‐CoV‐2

Cutaneous Neurofibromas and Quality of Life in Adults With Neurofibromatosis Type 1

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