Aug 1st, 2022 Gerry Nesbitt joins the CASK Gene Foundation as Informatics Advisor (volunteer).
Gerry Nesbitt has joined the CASK Gene Foundation as Informatics Advisor (volunteer). The CASK Gene Foundation was created to improve the lives of those impacted by CASK gene disorders by acting as a global voluntary health organization, dedicated to: (1) Improve awareness, education, and advocacy relating to this condition, (2) Provide assistance to patients and their families, and (3) Support and engage in research to accelerate the path to better diagnosis, treatment and perhaps someday - a cure - for the effects of CASK gene disorders. Website: www.caskgene.org
Jul 30th, 2022 The Inchstone Project Team, July 2022 (Columbus, OH)
Jul 30th, 2022 Delighted to attend the SCN2A Summer Seminar, July 2022 (Columbus, OH)
July 25th 2022 CLIRINX Set-up!
CLIRINX Ltd. was registered on July 25th 2012...That was 10 years ago!
Jul 19th, 2022 CLIRINX Secures Contract with Emory University/Boston Children's Hospital.
CLIRINX has secured a contract with Emory University (Children's Healthcare of Atlanta)/Boston Children's Hospital to develop a Pediatric Neuro-inflammatory Registry.
Jun 10th, 2022 New Paper Published CRID - A unique, universal, patient-generated identifier to facilitate collaborative rare disease clinical research. (IMU. June 2022)
We have successfully published a paper describing CRID in the journal "Informatics in Medicine Unlocked".
Conclusion: A unique, universal, patient-generated identifier can be used to facilitate collaborative rare disease clinical research. With patients' data connected using the CRID identifier and shared across study protocols, better insights can be gained into how a disease develops that is not possible with inaccessible data silos.
Publication: Nesbitt G., Murphy P. (2022). CRID - A unique, universal, patient-generated identifier to facilitate collaborative rare disease clinical research. Informatics in Medicine Unlocked (June 2022).
CRID Website: : www.TheCRID.org
May 5th, 2022 CLIRINX partners with Lurie Children's for Lennox-Gastaut Syndrome Research Study
CLIRINX has partnered with Lurie Children's Hospital of Chicago to provide EDC for a multi-year project awarded by the Patient-Centered Outcomes Research Institute (PCORI) to conduct a study on comparative effectiveness of palliative surgery versus additional anti-seizure medications for Lennox-Gastaut Syndrome.
May 5th, 2022 CLIRINX picked as a Finalist in Tech Excellence Awards 2022
CLIRINX is delighted to be picked as a finalist in the Tech Excellence Awards 2022 in the category Project of the Year for its CRID - Clinical research ID project. The Tech Excellence Awards is Ireland's principal badge of honour in the IT industry. This Awards programme recognises excellence not only in implementing tech solutions, but also in the business of marketing and implementing technology for business.
Aug 12th, 2021 New 'CRID - Clinical Research ID' Service Launched for Unique Universal Patient Identifiers
The Clinical Research ID (aka The CRID™) is a service that enables participants involved in clinical research create their own unique universal identifier. This CRID identifier can be used across multiple clinical research studies, thereby facilitating data sharing and eliminating data silos. Link: The CRID Website Twitter: @_TheCRID
Jul 1st, 2021 CLIRINX Secures Multi-Year Contract with the Univ. of Melbourne for Global Epilepsy Study
CLIRINX has secured a major multi-year contract with the University of Melbourne to provide EDC for a large global study of genetic epilepsies, and probably one the most important epilepsy natural history studies conducted in recent times.
Mar 31st, 2021 SCN2A Clinical Trial Readiness Study (CTRS) Launched using CLIRINX
FamilieSCN2A and Lurie Children's Hospital have launched their 'SCN2A Clinical Trial Readiness Study' using the CLIRINX system. The purpose of this study is to provide information that will help researchers determine the performance of specific measures over time in children with SCN2A-DEE. This study will provide information on the reliability of these measures over a short period of time and the rate at which they change over time in an individual child. The data from this study will provide the basis for designing efficient therapeutic trials to test new treatments for SCN2A-DEE. This implementation uses the following CLIRINX products: EDC, Patient Portal, VarTracker (genetic variants), CRID (unique patient ID) and CX Proof (blockchain).
Mar 29th 2021 CLIRINX Integrated With Calendly
CLIRINX is now integrated with Calendly. Appointments/meetings created by the patient in Calendly are displayed in CLIRINX under the Patient Protocol. In addition, the user can see a list of all their upcoming appointments relating to a study.
Oct 2nd 2020 CLIRINX cxProof™ now supports Multiple Blockchains
In a first for CLIRINX, the cxProof product is now integrated with multiple blockchains, providing a tamper-proof timestamp irrefutably proving the existence of any digital content at a given time. In addition to storing document digital signatures in its ledger, the hash key is also added to Bitcoin, Ethereum and Aion. This service can be used for study documents, informed consents and GDPR consents (actually any documents), ensuring the documents are 100% secure and irrefutable.
Sep 17th 2020 CLIRINX Launches New Products for Digital Signatures and Visualizations (Proof™ and Charts™)
CLIRINX has released two new products for recording digital signatures and patient data visualizations. CX Proof™ is a REST API web service that allows you to record simple digital signature metadata in a ledger-like database. CX Charts™ provides features to generate milestone charts, timelines and graphs from patient data. These can be used to provide visual feedback to patients enrolled on your study and can be embedded in the patient portal.
Feb 24th 2020 The 'Ability Study' is launched using the CLIRINX Patient Portal
Lurie Children's Hospital has launched their 'Ability Study' using the CLIRINX Patient Portal. This study is designed to understand development,
communication, and behavior in children and young people with early life epilepsies and how these abilities progress over time. Instead of focusing
on the difficulties children and young people with early life epilepsy have, this study is designed to understanding their abilities.
This is achieved by focusing on skills that are appropriate for a child's development, not chronological age, and how those skills grow over time.
Study PI: AT Berg PhD
Jan 28th 2020 The CLIRINX Patient Portal v2 is now available
CLIRINX has launched the 2nd generation of the CLIRINX Patient Portal. With improved ease-of-use, graphics and features, the new portal supports multiple events (time points), one or more children/patients per account and supports multiple languages. Online Informed Consent/GDPR and the patient/parent can download their data with one click.
Nov 1st 2019 Channelopathy-Associated Epilepsy Research Center Website Launched
The Channelopathy-Associated Epilepsy Research Center is a multi-institutional and interdisciplinary research center that combines high-throughput technologies on non-neuronal cells with studies of human neuron and animal model systems. This study is funded by the NIH NINDS Center Without Walls U54 NS108874. The website was designed and developed by CLIRINX and can be viewed at https://epilepsy-channelopathy.org.
Sep 12th 2019 BioPharm Solutions Inc. selects CLIRINX to develop/implement EDF EEG Tool
BioPharm Solutions Inc. (NJ, USA) recently awarded CLIRINX a contract to develop and implement a system for de-identifying European Data Format (EDF) EEGs. This tool will be used for their clinical research study 'A Phase 2 Study to Assess the Safety, Tolerability, Exploratory Efficacy, and Pharmacokinetics of Orally Administered JBPOS0101 for Refractory Infantile Spasms Patients.' (ClinicalTrials.gov: NCT03976076)
Aug 14th 2019 CLIRINX Poster accepted for a platform presentation at the American Epilepsy Society Annual Meeting 2019
We're delighted to announce that our poster 'Early Life Epilepsy Natural History Project - Advancing knowledge of ultra-rare diseases with the CLIRINX informatics platform' has been accepted for a platform presentation at the 2019 Annual Meeting of the American Epilepsy Society.
Jul 23rd 2019 American Epilepsy Society Annual Meeting 2019 in Baltimore MD
We'll be attending the American Epilepsy Society Annual (AES) Meeting in Baltimore MD in early Dec 2019. We are co-authors on a number of abstracts, including:
• Early Life Epilepsy Natural History Project - Advancing knowledge of ultra-rare diseases with the CLIRINX informatics platform.
• Functional impairments in young people with early life epilepsies: influences of seizures, medications and sleep.
• ERGENT Study - Early Recognition of Genetic Epilepsy in Neonates.
If you'd like to meet to discuss your clinical research IT requirements, please contact us to schedule a time/place to meet-up.
Apr 26th 2019 CLIRINX picked as a Finalist in Tech Excellence Awards 2019
CLIRINX is delighted to be picked as a finalist in the Tech Excellence Awards 2019. The Tech Excellence Awards is Ireland's principal badge of honour in the IT industry. This Awards programme recognises excellence not only in implementing tech solutions, but also in the business of marketing and implementing technology for business.
Apr 26th 2019 Rett Syndrome Research Trust Closes-Out the OMBD Study
The Rett Syndrome Research Trust (RSRT) has closed-out their $4.5M Outcome Measures and Biomarkers Development (OMBD) study. The RSRT research group used CLIRINX EDC for electronic data collection from patients and physicians. The RSRT now has reliable outcome measures and biomarkers that will help greatly with efficient and effective clinical trials in the future. We'd like to take this opportunity to thank Monica and her team, and wish the RSRT the best of luck with their drive to develop new treatments and cures for Rett Syndrome and related MECP2 disorders. Website: Rett Syndrome - OMBD Study
Mar 31st 2019 CLIRINX now supports look-ups for ICD9, ICD10 and Human Phenotype Ontology Codes
CLIRINX has added new features to support look-ups for ICD9, ICD10 and Human Phenotype Ontology (HPO) codes. The ICD CM codes also support surgical procedures and medications. The HPO defines terms for more than 14,000 medical conditions and contains additional metadata such as synonyms, external references (e.g. SNOMED and UMLS) and alternative HPO identifiers. CLIRINX continues to be an innovator in clinical research IT and an early implementer of the Human Phenotype Ontology (HPO) in clinical research systems.
Mar 14th 2019 CLIRINX launches new Genetic Variant Tracker called 'VarTracker'
CLIRINX has developed a new web-based tool, called VarTracker©, for retrieving information on genetic variants and generating alerts when variant data changes. The end-user can search for variants of interest based on a RefSeq ID and a cDNA change, and the tool will search and extract data from a variety of public databases, such as ClinVar, NCBI Gene, UniProt, dbSNP, NCBI Books, PubMed, MalaCard, MyVariant, gnomAD, ExAC, Mutalyze and ENSEMBL. The system will then automatically re-check these variants regularly to see if any variant information has changed, and will alert you of any changes. Website: www.VarTracker.com
Mar 1st 2019 New CLIRINX Study - 'Channelopathy-Associated Epilepsy Research Center'
CLIRINX has been selected for a new US-based, multi-institutional study called the 'Channelopathy-Associated Epilepsy Research Center.' This project
will use the CLIRINX electronic-data capture system for collecting and managing phenotypic data and for genetic variant curation. The study's aims include determining the functional consequences
of many ion-based channel genetic variants and identifying which variants respond best to anti-epileptic drugs.
Study PIs: @ Children's Hospital of Philadelphia, Lurie Children's, Baylor College of Medicine, Cleveland Clinic and others.
Jan 7th 2019 Dravet Syndrome Foundation Shares Results from Early Life Epilepsy Natural History Study
The Dravet Syndrome Foundation has shared preliminary results from Dr. Anne Berg's Early Life Epilepsy Natural History Study.
This study enrolled over 100 parents of children with Dravet Syndrome. The parents completed online data collection forms covering
demographics, seizure history, sleep, autonomic, behaviour, gross motor, fine motor, vision & hearing, communication, academics, eating, gastrointestinal and family impact.
The CLIRINX system was used for this research study. Link to Report
Study PI: AT Berg PhD
Nov 1st 2018 Lurie Children's goes live with 'Early Life Epilepsy Natural History Project'
Lurie Children's has gone live with the 'Early Life Epilepsy Natural History Project.' This study aims to define and identify the areas where children with early life epilepsies
face difficulties and how these issues evolve over time. Parents of children with epilepsy are using the CLIRINX Patient Portal to register for a study and complete all the forms online.
Study PI: AT Berg PhD
July 25th 2018 Baylor College of Medicine launches the ERGENT Study using CLIRINX
The Baylor College of Medicine has launched their new study called Early 'Recognition of Genetic Epilepsy in Neonates' (ERGENT). Seizures in babies can be the result
of a birth injury, but in about 5-10% of instances, they are caused by a specific genetic change. Research has allowed doctors to learn features that are common
in babies with genetic epilepsy. ERGENT is designed to test whether those features can identify babies with genetic epilepsy very soon after birth,
so their treatment may be targeted to the specific cause.
Study PI: Edward C. Cooper MD PhD
July 20th 2018 Luirie Children's goes 'live' with the Early Life Epilepsy Natural History Project using CLIRINX
Luirie Children's goes 'live' with the Early Life Epilepsy Natural History Project using the CLIRINX system. This study that aims to define and identify
the areas where children with early life epilepsies face difficulties and how these issues evolve over time. The information that comes from this project can be used to inform parents,
educate providers, and facilitate trials of new therapies in the future. The project also strives to answer the questions that parents of children with early life epilepsies have and
to establish a platform that future studies can utilize in defining the different challenges children with epilepsy face and the impact on the family.
Study PI: Dr. Anne Berg, Ph.D.
May 8th 2018 CLIRINX selected as a Finalist for the Bio-IT World Best Practices Award 2018
CLIRINX has been selected as a finalist for the Bio-IT World Best Practices Award 2018 for its implementation of CLIRINX at the Baylor College of Medicine in the catagories of Knowledge Management and Clinical/Health IT. Bio-IT World has held the Best Practices awards since 2003, highlighting outstanding examples of technology innovation in the life sciences, from basic R&D to translational medicine. The Award honors excellence in bioinformatics, basic and clinical research, and IT frameworks for biology and drug discovery.
Feb 15th 2018 CLIRINX secures contract to develop bioinformatics tools for research into Sudden Cardiac Death.
CLIRINX has secured a contract to develop bioinformatics tools for Northwestern Medicine (USA) as part of their precision medicine initiative. These tools will be used to investigate genetic variants
associated with heart rhythm (channelopathies) and myocardial function (cardiomyopathies), which cause approximately a quarter of all cases of sudden unexplained death (SUD).
Study PI: Gregory Webster, M.D.
Jan 24th 2018 CLIRINX wins major 'SME Award'
CLIRINX has won at the 'SME Awards 2018' in the category 'New Product/Service'. These awards acknowledge the achievements of small to medium sized businesses in Ireland. [link]
Jan 5th 2018 CLIRINX signs major contract with Lurie Children's Hospital of Chicago (USA)
CLIRINX has signed a major 3 year contract with Lurie Children's Hospital of Chicago (Illinois, USA) to implement CLIRINX EDC and AI for their
precision medicine initiative and rare disease
natural history studies. The scope of the contract includes CLIRINX web-based electronic data collection and artificial intelligence systems,
cloud-based hosting on Amazon AWS (using TerraAlto AWS Consultants) and informatics support. 'Lurie will now have a state-of-the-art IT system to improve
the quality of their research data and reduce data collection costs significantly,' says Mr Gerry Nesbitt, CEO, CLIRINX.
'By implementing the CLIRINX system, Lurie researchers can potentially improve people's lives by finding new cures and better treatments for human diseases.'
Study PI: Dr. Anne Berg, Ph.D.
Dec 4th 2017 CLIRINX selected for 'Genetic Epilepsy in Neonates Study' at Baylor College of Medicine (Texas, USA)
The Baylor College of Medicine (Texas, USA) has selected CLIRINX as their IT platform for a new epilepsy study.
The title of this study is 'Early Recognition of Genetic Epilepsy in Neonates Study (ERGENT)',
and aims to overcome delays in genetic screening by demonstrating the feasibility of early diagnosis of early onset genetic encephalopathies,
especially KCNQ2 and SCN2A related epileptic encephalopathy.
Study PI: Edward Cooper, M.D., Ph.D.
Dec 1st 2017 CLIRINX shortlisted as 'Innovator of the Year' at SFA National Small Business Awards 2018
CLIRINX is delighted to announce that it has been shortlisted as a finalist in the category 'Innovator of the Year' in the SFA National Small Business Awards 2018. This award is run by the Small Firms Association. CLIRINX will feature at the SFA Small Business Showcase in the RDS in Feb 2018, and the winners will be announced in Mar 2018 at the Awards Gala Ceremony.
Nov 8th 2017 CLIRINX is a Finalist in the SME Awards 2017
CLIRINX has been selected as a finalist in this year's SME Awards 2017. We are a finalist in 2 categories, 'New Business' and 'New Product'. These awards acknowledge the achievements of small to medium sized businesses in Ireland. [link]
July 11th 2017 CLIRINX is a Finalist in the DatSci Awards 2017
Delighted to announce that CLIRINX (Clinical Research IT) is a finalist in this year's DatSci Awards in the category 'Best use of Data Science in a Start-up' for its electronic data collection and artificial intelligence (AI) solutions in clinical research. The DatSci awards aim to acknowledge the value contributed by Data Science to the success of businesses and community, bringing data scientists together to celebrate Ireland's amazing accomplishments in Data Science. [link]
June 12th 2017 Children's Hospital Colorado picks CLIRINX for new Infantile Spasms Study
Children's Hospital Colorado has picked CLIRINX for study management and electronic data collection on a new
pediatric clinical research study. The title of the research study is 'A Novel Approach to Infantile Spasms: Combined Cosyntropin
Injectable Suspension, 1 mg/mL and Vigabatrin Induction Therapy'. This 5-year study will enroll ~400 infants and children
with new onset Infantile spasms from 15+ medical centers. Infantile spasms, also know as West syndrome,
occurs in 2-5 per 10,000 live births and represent a severe epileptic encephalopathy in infancy.
Study PI: Kelly Knupp, M.D.
May 18th 2017 CLIRINX wins Silver award at Bank of Ireland Startup Awards 2017
CLIRINX has won the Silver award at the Bank of Ireland Startup Awards 2017 in the category 'Healthcare Startup'. These awards are Ireland's premier awards program for early stage Irish businesses, and recognise and reward the spirit of entrepreneurship in Ireland. This year has been a fantastic year for CLIRINX, and this award gives further recognition to our commitment to help bring the best IT solutions to the medical research community. [link]
April 26th 2017 CLIRINX nominated as finalist in Bank of Ireland Startup Awards 2017
CLIRINX has been selected as a finalist in the Bank of Ireland Startup Awards 2017 in the category 'Healthcare Startup'. These awards are Ireland's premier awards program for early stage Irish businesses, and recognise and reward the spirit of entrepreneurship in Ireland. The winners will be announced on May 18th. This year has been a fantastic year for CLIRINX, and this award nomination gives further recognition to our commitment to help bring the best IT solutions to the medical research community. [link]
Mar 24th 2017 CLIRINX involved in Pediatric Neurology publication: 'Optimizing the Diagnosis and Management of Dravet Syndrome'
CLIRINX is proud to announce that it was involved in the medical publication 'Optimizing the Diagnosis and Management of Dravet Syndrome: Recommendations From a North American Consensus Panel'. This major paper was published in Pediatric Neurology 68 (2017) 18-34 and is available for download by clicking here. The objectives of this study were to establish standards for early, cost-effective, and accurate diagnosis; optimal therapies for seizures; and recommendations for evaluation and management of comorbidities for children and adults with Dravet syndrome. This study used CLIRINX for electronic data collection.
Mar 22nd 2017 CLIRINX can help with planned NIH research budget cuts!
With the planned reduction of 18% to the National Institutes of Health budget, CLIRINX is the ideal partner to provide all the IT for your research studies. Our sofware products are the best electronic data collection tools available for academic medical research, which we provide for free, and our research IT expertise is second to none. We help your research studies collect the best research data possible and eliminate IT costs to provide massive cost savings. Contact us today for as demo and discuss how CLIRINX can help your research studies in these uncertain times.
Mar 15th 2017 CLIRINX launches a new Artificial Intelligence product for Medical Research
CLIRINX has added a new Artificial Intelligence (AI) product to its Clinical Research IT software suite. The Expert System, named 'CX Expert' can be used to help with decision-making and solve complex problems in medical research. It consists of an inference engine and can support multiple user-defined knowledge bases. The inference engine uses backward chaining (depth first) methods and accommodates fuzzy logic and formulas in IF conditions. CLIRINX is the only medical research EDC system that incorporates an expert system. Some examples of its current uses include 'determining the patient's seizure type', 'patient eligibility' and 'managing adverse events'.
Mar 2nd 2017 CLIRINX wins 'Emerging New Business' Award at SFA Awards 2017
CLIRINX was a winner in the 'Emerging New Business' category of the Small Firms Association Business Awards 2017. These awards recognize the achievement and excellence in small business. The award was presented at a gala event in the RDS on March 1st 2017 by the Minister for Employment and Small Business, Pat Breen, TD, and SFA Chair, Sue O'Neill. [link] [photo]
Mar 1st 2017 CLIRINX profiled in Irish Independent SFA Supplement
As a winner at the SFA National Small Business Awards 2017 (Emerging New Business), CLIRINX was profiled in the 2017 Small Firms Association business supplement in the Irish Independent. The companies showcased were from a wide range of business sectors, and have demonstrated entrepreneurship, product and market innovation, and a commitment to business growth. The awards were presented at a gala event in the RDS on March 1st 2017 by the Minister for Employment and Small Business, Pat Breen, TD. [link]
Feb 1st 2017 CLIRINX exhibits at the SFA Small Business Showcase in the RDS
As a winner at the SFA National Small Business Awards 2017 (Emerging New Business), CLIRINX had the opportunity to exhibit at the SFA Small Business Showcase 2017 held at the RDS, Dublin. A showcase of positivity, this event highlighted the entrepreneurship, innovation and achievements of small enterprises in Ireland. The conference was officially opened by the Minister for Jobs, Enterprise & Innovation, Mary Mitchell O'Connor, TD.
Dec 5th 2016 CLIRINX/KCNQ2 Poster presented at American Epilepsy Society 2016
Poster #3.329 "An Informatics Infrastructure for KCNQ2 Encephalopathy Research Including a Patient Registry, Database, Curation Platform, and Website" was presented at the American Epilepsy Society Annual Meeting 2016 in Houston, TX. This infrastructure was built using the CLIRINX Clinical Research IT platform. [link]
Dec 5th 2016 CLIRINX shortlisted as finalist at SFA National Small Business Awards 2017
CLIRINX is delighted to announce that it has been shortlisted as a finalist for 'Best Emerging New Business' at the SFA National Small Business Awards 2017 [link] . This award is run by the Small Firms Association. CLIRINX will feature at the SFA Small Business Showcase in the RDS on Feb 1st 2017, and the winners will be announced on Mar 1st 2017 at the Awards Gala Ceremony.
Nov 11th 2016 CLIRINX shortlisted as finalist at Irish MedTech Excellence Awards 2016
CLIRINX is delighted to announce that it has been shortlisted as a finalist for 'Emerging Medtech Company of the Year' at the Irish MedTech Excellence Awards 2016. This award is run by The Irish Medical Devices Association, Enterprise Ireland and IDA Ireland.
Oct 8th 2016 CLIRINX attends the KCNQ2 Cure 2016 Family & Professional Summit
Gerry Nesbitt attended KCNQ2 Cure's 2016 Family & Professional Summit in Silver Springs, Maryland. This 3-day event was designed to unite all groups committed to improving the lives of those with KCNQ2 Epilepsy - including families, caregivers, clinicians, researchers and professionals in the pharmaceutical industry.
Mar 2nd 2016 Rett Syndrome Research Trust selects CLIRINX for electronic data collection
The Rett Syndrom Research Trust (RSRT) is now using CLIRINX for electronic data collection on their academic medical research projects. Over 30 data collection forms will be imported from RedCap, and the application will be rolled-out to users across multiple clinical sites.
Jan 10th 2016 Baylor College of Medicine selects CLIRINX for KCNQ2/3 Research
The Baylor College of Medicine is now using CLIRINX for the Rikee.org research project (Rational Intervention for KCNQ2/3 Epileptic Encephalopathy Project). This group investigates new treatments and cures for KCNQ2/3 related illnesses. In addition, we will custom develop an integrated KCNQ2/3 gene variant pathogenity and severity calculator.
July 10th 2015 Dravet Foundation selects CLIRINX for electronic surveys
The Dravet Foundation will be using CLIRINX for electronic surveys. Large data collection surveys will be sent
in 3 phases to physicians and family members in the US and Canada.The data collected will be analysed by investigators at the Mayo Clinic
and Lure Children's.
July 25th 2012 CLIRINX Set-up!
CLIRINX Ltd. was registered on July 25th 2012...That was 10 years, 2 weeks, 2 days, 20 hours, 14 minutes, 40 seconds ago.