Hemophilia patient registry software

World federation of hemophilia guide to developing a national. These webinars and webcasts bring the experience of expert providers and your peers directly to you. It is a national network of patients with hemophilia and has official recognition from the world federation of hemophilia wfh as national member organization nmo. Immune tolerance treatment in haemophilia patients with.

National hemophilia foundation partners with arbormetrix. A computer software to assist patient management was developed and all the aiceaffiliated haemophilia treatment centres htc were. Evaluation of a webbased registry of inherited bleeding disorders. Role of the ema patient registries task force in guiding. The registry for bleeding disorders surveillance the registry is a component of community counts, a public health monitoring program funded by cdcs division of blood disorders. During the forecast period, the standalone software segment is estimated to dominate the patient registry software market. Patients who volunteer to participate in the registry will have routine medical information collected during visits to the htc. This initiative provides an appropriate starting point to consider what regulators need from haemophilia registries. The summaries below were produced from the canadian blood disorders registry, which covers all of canada except for british columbia. The european medicines agency ema is currently embarking on a strategy for patient registries. The patient registry is about bringing patients together from around the world in a cooperative fashion.

Dutch hemophilia patient registry and digital infusion log. The hemophilia foundation pakistan hfp, a national notforprofit organization, was established in 1995. The study compared the incidence and risk factors of the major comorbidities of 411 workers with hemophilia enrolled in taiwans national health insurance research database between 1997 and 2010 with an age and sexmatched general population. Gzs announces worldwide release of hemaglobal ehr patient. The swedish hemophilia society fbis is a nonprofit organization for individuals affected by hemophilia in sweden. You can join the registry to share your information with researchers and receive updates about participating in new research studies. Swiss hemophilia registry full text view clinicaltrials. Hemophilia inhibitor previously untreated patient study hips the safety and scientific validity of this study is the responsibility of the study sponsor and investigators. It was established in 1948 and now has 52 different chapters spanning the united states. Pan is an independent, national 501c3 organization dedicated to helping federally and commercially insured people living with lifethreatening, chronic and rare diseases with outofpocket costs for their prescribed medications. Software solutions for data entry, transfer and verification from electronic medical records should. The factors discussed included registry governance, patient consent, data sharing, data quality, registry interoperability and core common data elements needed by stakeholders.

List of registries national institutes of health nih. Nov 21, 2019 htf market intelligence via comtex the patient registry software market is expected to see a growth of 11. Nov 15, 2019 the registry for bleeding disorders surveillance the registry is a component of community counts, a public health monitoring program funded by cdcs division of blood disorders. Alok srivastava chair department of hematology, christian medical college, vellore, tamil nadu, india dr.

Community counts registry for bleeding disorders surveillance. World federation of hemophilia guide to developing a. Hemophilia is an inherited bleeding disorder in which the blood does not clot properly. Workshop participants had clinical, regulatory or development experience with haemophilia products. The chr exists to promote research, educational and administrative initiatives of the ahcdc, which in turn welcomes the use of its data by all other organizations or individuals. New patient assistance program for people with hemophilia. Wfh network wfh usa wfh usa advances the global mission of the wfh in the united states. Swiss hemophilia registry the safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Risk of major comorbidities among workers with hemophilia. Hemaware, the national hemophilia foundations awardwinning quarterly magazine, is the bleeding disorders communitys premier lifestyle publication. It features stories on research breakthroughs, family concerns, exercise and nutrition, womens health needs and life stage transitions. Community resources national hemophilia foundation.

The objective of this manuscript is to provide key insights on the demographics of patients with acquired hemophilia in the htrs registry. Hemophilia foundation pakistan hfp about patient registry. Expenses incurred by the patient s companion to enable the patient to receive services from the hemophilia disease management program for children under the age of 18, lodging will be covered for one 1 or two 2 parents. Nhfs overarching aim for the registry is to support research activities that will improve the quality of life of persons with a bleeding disorder and enhance the ability of. The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. The national hemophilia foundation nhf is a nonprofit specifically focused on accelerating research for hemophilia, a rare blood disorder. A computer software to assist patient management was developed and all the aiceaffiliated haemophilia treatment centres htc were prompted to adopt it. Hemaglobal is a fullpurpose emrehr patient registry solution for hemophilia and bleeding disorders.

World bleeding disorders registry world federation of. The wbdr 2018 data report includes data on more than 1,000 patients from 29 htcs and 19 countries. As the 2018 numbers were the first produced from cbdr instead of the chr registry, there may be reductions or increases in the numbers of patients diagnosed. Medicare part b covers blood clotting factors and related items used for the administration of such factors for hemophilia patients competent to use such factors without medical supervision. Having an adequate supply of treatment products at home is critical to achieve safe patient care and continuity of treatment. The new communitypowered registry provides a 360degree view of what it means to live with a bleeding disorder. To identify ways that provision of hemophilia care can be. Many registries collect information about people who have a specific disease or condition, while others seek participants of varying health status who may be willing to participate in research about a particular disease.

Clinical trials below is a list of active clinical trials worldwide which involve patients with inherited bleeding disorders. World federation of hemophilia guide to developing a national patient registry. Receipts are required for the reimbursement of meals. The pednet registry is registered under the number nct02979119. Current status of italian registries on inherited bleeding disorders. Listing a study does not mean it has been evaluated by the u. The registry data are collected from a subset of patients seen at hemophilia. Report on haemophilia registries workshop 8 june 2018. It enables you to personalize prophylaxis for your patients on advate.

The link from each study title will take you to clinicaltrials. The autoimmune registry supports research for acquired hemophilia by collecting information about patients with this and other autoimmune diseases. Swedish hemophilia society nord national organization for. Patient registry software market to enjoy explosive. Outside european continent, there are other reference npr in this area, as is the case as the npr from canada. The mission of cdcs division of blood disorders is to reduce the morbidity and mortality from blood disorders through comprehensive public health practice. Gzs announces worldwide release of hemaglobaltm ehr patient. Hemophilia is an inherited bleeding disorder in which the blood does not clot. Twice a year a predefined set of anonymized data is centralized and merged into a national database. Based on type of software, the patient registry software market has been segmented into two segments, namely, standalone software and integrated software. The aim of the pednet registry is to include complete cohorts of all newly diagnosed patients born from 01012000 with congenital haemophilia a and b factor viii ix. About patient registry hemophilia foundation pakistan. Gzs announces worldwide release of hemaglobal ehr patient registry solution for hemophilia and bleeding disorders webtracker hemophilia software used as the national information infrastructure. The hemostasis and thrombosis research society htrs registry was used to monitor the postapproval use of recombinant factor viia.

Jul 09, 2015 the autoimmune registry supports research for acquired hemophilia by collecting information about patients with this and other autoimmune diseases. Gzs releases webtrackerhemophilia ehr patient registry. The wbdr is a webbased data entry system that provides a platform for a network of hemophilia treatment centres htcs around the world to collect uniform and standardized patient data and guide clinical practice. Having a national patient registry is also very useful for any organization. Assessment of acquired hemophilia patient demographics in. Duplicated entries are managed through a confidentiality sparing mechanism. July 0102, 2015 ema hemophilia registries workshop slide 10. Patients who volunteer to participate in the registry will have routine medical. Bleeding disorder registry helps hemophilia research hemaware. Gzs releases hemaglobal ehr patient registry solution for. World bleeding disorders registry world federation of hemophilia. Nhfs online education provides free quality education on issues that matter to all members of the bleeding disorders community, from moms of young children to adults with inhibitors.

Assessment of acquired hemophilia patient demographics in the united states. Being able to compare information among different part of the country can be helpful when lobbying for improved care. Without treatment, hemophilia causes crippling pain, severe joint damage, disability, and death. It also allows those living with the disease to track their daily physical activities, steps and heart rate to help keep them fit and healthy. Hospitals and pharmaceutical companies use clinicalpursuit to easily and efficiently collect data on groups of patients who are in clinical studies taking a new drug using a new medical device have a particular diagnosis or condition or are having a. The patient access network pan foundation has opened a new patient insurance premium assistance program for individuals with hemophilia. This study was an important step toward a patient registry in a hemophilia treatment center in pakistan. Daily brushing and flossing with regular visits to the dentist are necessary to prevent gum disease and buildup of dental tartar, which will increase bleeding tendency and accelerated decay.

Its programs and initiatives are made possible through the generosity of. At hope for hemophilia we are striving to connect the dots with the resources that make the hemophilia better everyday. Our national hemophilia organizations and hemophilia treatment centres are key partners in this network. Prospective registry of european hemophilia b patients. Kessler cm1, ma ad, almondhiry ha, gut rz, cooper dl. Hemaglobal is the chosen brand name for the global release of webtracker hemophilia, the electronic medical records emr patient registry system used in virtually all hemophilia treatment centers in the united states to report timely information to the centers for disease control and prevention cdc on all patients with bleeding and clotting disorders nationwide. Fda clears marketing mypkfit for advate hemophilia a.

The webapplication to support the portuguese national registry for hemophilia this work aims to present the webapplication to support a national registry of hemophilia and other congenital coagulopathies in portugal. We present a retrospective study of immune tolerance treatment itt carried out in 42 spanish haemophiliac patients. Description the swedish hemophilia society fbis is a nonprofit organization for individuals affected by hemophilia in sweden. Data on their patient populations are contributed by approximately htcs in. Community counts is a public health monitoring program funded by cdcs. A computer software to assist patient management was developed and all the aice. Interactive patient registry created by nhf allows. Ours is a mixed systems combining of patient, medical and home ministry registry. Theres a very human element to the wbdr that cant be overstated, explains glenn.

Guide to developing a national patient registry 1 hemophilia affects about 400,000 people worldwide. Swedish hemophilia society nord national organization. National patient registries npr have an important role in the. Patient registry software market by registry type, software. For patients with hemophilia, dental care and mouth hygiene are imperative. For information about hemophilia and bleeding disorders, see these patient education materials or the list of links and resources. Mar 19, 2008 the aice identified an expert panel to steer the registry.

Recently, they have partnered with an organization called arbormetrix to establish a patient registry. Patient registry software disease registry medical registry. The aim is to get the best capture of data in the european union eu and build on existing expertise in this area. Registry for bleeding disorders surveillance community. Community counts is a project funded by the centers for disease control and prevention through a cooperative agreement awarded to athn in partnership with the u. Wfh, national patient registry guide by bruce evatt, md. Dental care for patients with hemophilia, uc san diego health. We do not have an exhausted list of resources but this is our attempt at helping you sort through the vast amounts of information available and understand the roles that each plays in helping you as a patient. Gzs announces worldwide release of hemaglobaltm ehr. Wfh elearning platform world bleeding recipients double. Jul 05, 2012 immunosuppression for acquired hemophilia a. Be sure you have documented all infusions administered so they have the information for their records.

Food and drug administration fda the 510k marketing clearance was granted to shire, the developer, following its submission of a premarket notification, which is necessary if a new device is intended for commercial distribution, or if an already. A registry of individuals with hereditary bleeding disorders, owned and operated by the association of hemophilia clinic directors of canada. Guide to developing a national patient registry is published by the world federation of. Brewer department of oral surgery, the royal infirmary. Data was added for british columbia where available. Expenses incurred while traveling with the patient between the patients home and the medical facility to receive services in connection with the hemophilia disease management program. The aice identified an expert panel to steer the registry. Clinicalpursuit patient registry software can capture data and build a registry for hundreds or even thousands of patients. Patient education uc san diego hemophilia and thrombosis. Upon discharge from the hospital, your patient will need a log showing infusions given while in your care. Over the next several months, selected hemophilia treatment centers htcs from around the world will be invited to participate in this patient registry. With treatment products and proper care, people with hemophilia can live healthy lives. About patient registry hemophilia foundation pakistan hfp.

As one of the worlds largest biopharmaceutical companies, pfizer has been working to bring its expertise and breadth of resources to help the people and families affected by hemophilia. Guidelines for the management of hemophilia 2nd edition prepared by the treatment guidelines working group, on behalf of the world federation of hemophilia wfh dr. Hemaglobal is a fullpurpose emr ehr patient registry system that serves as a stable, scalable platform for integrating data from multiple sources, such as from pharmacies, laboratories, clinics and record archives, and in industry standard formats, including popular frontoffice applications and mainframe applications with hl7 interface connectivity. Immunogenicity predictionassessment implementation hla typing and genotyping considering ethnicity, geographical location patient stratification, especially with small patient populations. Italian registry of haemophilia and allied disorders. Acquired hemophilia genetic and rare diseases information. Patients data were entered by health professionals working in the haemophilia treatment centers htcs. A registry is a collection of information about individuals, usually focused around a specific diagnosis or condition. Jun 28, 2017 in this video shared by colleen, learn about a mobile app from pfizer which helps hemophilia patients track bleeds, infusions and factor supply. Registry of hemophilia and other bleeding disorders in syria.

Report on haemophilia registries workshop european medicines. Authorization safety study pass global program was designed to assess safety and effectiveness of rahf. Gzs announces worldwide release of hemaglobal ehr patient registry solution for hemophilia and bleeding disorders webtrackerhemophilia software used as the national information infrastructure. Our goal is to enable and assist in the provision of lifelong support to patients and their healthcare providers in the management of hemophilia. The wbdr is a webbased data entry system that provides a platform for a network of htcs to collect uniform and standardized data on people with hemophilia. Request pdf hemophilia databases bleeding disorder databases have. A webbased software to help personalize dosing regimens for some hemophilia a patients has received marketing clearance from the u.

Hemophilia inhibitor previously untreated patient study. Hemophilia is a group of hereditary bleeding disorders characterized by deficiency of one of the blood factors necessary for blood clotting coagulation. Workshop on haemophilia registries european medicines agency. Providers not using pcace should contact their software vendor. The national hemophilia foundation nhf has selected arbormetrix as its. Hemophilia tracking app helps patients get the best treatment.