Introduction: The number and quality of existing patient registries are not known in Portugal. In order to improve the knowledge regarding this issue, an interactive tool (RegisPt) was developed to identify and characterize all available patient registries in our country. This article aims to describe the RegisPt design, data model, and due functionalities. Methods: RegisPt was developed in Microsoft Office Access 2010 and all variables definitions were done according to standardized international classifications. A review of the available literature and web resources was performed in order to identify all relevant patient registries. Results: The RegisPt platform is divided into 5 core modules containing comprehensive information from each patient registry (general data, registry design, characterization, effectiveness, and publications). Effectiveness is of utmost importance for health technology assessment and is divided into 2 sections: the exposure (health care service, pharmaceutical drugs, and medical devices) and the outcomes (safety, clinical, and economic). The RegisPt platform allows adding and editing registries as well as consulting all available registries in an interactive and user-friendly way, using a preferred query (e.g., registry name, institution, and therapeutic area). About 50 patient registries were identified and characterized in Portugal in accordance with the patient registry definition of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Discussion: The RegisPt is a first step to better understand and use the available resources for health research in Portugal. RegisPt can promote collaboration between researchers and registry owners and encourage the efficient use of resources and may improve the access to registries. This project may also be useful to identify therapeutic areas still lacking patient registries and to optimize existing ones in the country, by comparing registry design, quality, and functional strategies. In the future, this valuable platform may be particularly relevant for researchers and authorities aiming to carry out health technology assessment.

The Clinical Case Registries (CCR) replaced the former Immunology Case Registry and the Hepatitis C Case Registry with local and national databases. The CCR:HIV and CCR:HCV are administrative and clinical databases designed to provide population-based data on VA patients infected with Human Immunodeficiency Virus (HIV) and/or Hepatitis C virus (HCV). Each Veterans Health Information Systems and Technology Architecture (VistA) system contains a local CCR where patients who are potentially HIV or HCV infected are identified based on International Classification of Diseases (ICD-9) codes and/or positive antibody test results. The local HIV or HCV coordinator must review these cases to determine which patients are truly infected and should be added to the local registry. The local CCR provides extensive reporting capabilities to the local HIV and HCV clinicians to monitor their patient population. The local CCR software also extracts data elements from multiple VistA packages and transmits Health Level Seven (HL7) messages to the national database at VA Austin Information Technology Center. The national database is used for monitoring clinical outcomes, assessing resource utilization and quality assurance.

Around *********** carbon offset credits had been issued globally by the four major voluntary offset project registries as of April 30, 2025. The Verified Carbon Standard (VCM), run by Verra, is the largest issuer of voluntary carbon credits, having issued a total of *** billion. Each carbon offset, or credit, represents one metric ton of carbon dioxide equivalent.

The rising incidence of chronic diseases such as cancer, diabetes, and cardiovascular diseases is propelling the adoption of pPatient rRegistry sSoftware. The growing adoption of electronic health records (EHR) is driving the market size to surpass USD 1.71 Billion in 2023 to reach a valuation of around USD 4.85 Billion by 2031.

In addition to this, tThe stringent regulation to implement electronic patient records is spurring up the adoption of pPatient rRegistry sSoftware. Increasing pressure to improve the quality of care and reduce healthcare costs, rising adoption of EHRs and other eHealth solutions is enabling the market to grow at a CAGR of 13.89% from 2024 to 2031.

Patient Registry Software Market: Definition/ Overview

Patient registry software is a database management system designed to capture comprehensive information about patients with a particular condition, disease, or characteristic. This information typically includes demographic data, medical history, clinical outcomes, treatment patterns, and follow-up data collected longitudinally from multiple sources, such as electronic health records (EHRs), administrative databases, and patient-reported outcomes.

Patient registry software facilitates disease surveillance efforts by systematically collecting and analyzing data on disease incidence, prevalence, risk factors, and outcomes. Registries help public health agencies, researchers, and policymakers monitor disease trends, identify emerging health threats, and evaluate the effectiveness of prevention and control measures.Patientmeasures. Patient registry data informs health policy decisions, healthcare planning, resource allocation, and healthcare financing strategies. Registries provide evidence to support clinical guidelines development, coverage decisions, reimbursement policies, and population health management initiatives aimed at improving healthcare access, equity, and affordability.

The future of patient registry software lies in leveraging advanced analytics, machine learning, and predictive modeling techniques to extract actionable insights from registry data. Predictive analytics can identify at-risk patient populations, predict disease progression, and personalize treatment approaches, leading to more targeted and effective interventions.

The Veterans Affairs Central Cancer Registry (VACCR) receives and stores information on cancer diagnosis and treatment constraints compiled and sent in by the local cancer registry staff at each of the 132 Veterans Affairs Medical Centers that diagnose and/or treat Veterans with cancer. The information sent is encoded to meet the site-specific requirements for registry inclusion as established by several oversight bodies, including the North American Association of Central Cancer Registries, the American College of Surgeons' Commission on Cancer, and the American Joint Commission on Cancer, among others. The information is obtained from a wide variety of medical record documents at the local medical center pertaining to each Veterans Health Administration (VHA) cancer patient. The information is then transmitted to the VACCR. Details collected include extensive demographics, cancer identification, extent of disease and staging, first course of treatment, and outcomes. Data extraction is available to researchers with VA approved Institutional Review Board studies, peer review, and Data Use Agreements.

SEER Limited-Use cancer incidence data with associated population data. Geographic areas available are county and SEER registry. The Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute collects and distributes high quality, comprehensive cancer data from a number of population-based cancer registries. Data include patient demographics, primary tumor site, morphology, stage at diagnosis, first course of treatment, and follow-up for vital status. The SEER Program is the only comprehensive source of population-based information in the United States that includes stage of cancer at the time of diagnosis and survival rates within each stage.

United States Motor Vehicle Registration: Total data was reported at 283.401 Unit mn in 2022. This records an increase from the previous number of 282.355 Unit mn for 2021. United States Motor Vehicle Registration: Total data is updated yearly, averaging 93.950 Unit mn from Dec 1910 (Median) to 2022, with 113 observations. The data reached an all-time high of 283.401 Unit mn in 2022 and a record low of 0.469 Unit mn in 1910. United States Motor Vehicle Registration: Total data remains active status in CEIC and is reported by Federal Highway Administration. The data is categorized under Global Database’s United States – Table US.TA011: Motor Vehicle Registration. Data starting 2011 includes information on motorcycle registrations.

Background: The focus on the quality of the procedures for data collection, storing, and analysis in the definition and implementation of a rare disease registry (RDR) is the basis for developing a valid and long-term sustainable tool. The aim of this study was to provide useful information for characterizing a quality profile for RDRs using an analytical approach applied to RDRs participating in the European Platform for Rare Disease Registries 2011-2014 (EPIRARE) survey. Methods: An indicator of quality was defined by choosing a small set of quality-related variables derived from the survey. The random forest method was used to identify the variables best defining a quality profile for RDRs. Fisher's exact test was employed to assess the association with the indicator of quality, and the Cochran-Armitage test was used to check the presence of a linear trend along different levels of quality. Results: The set of variables found to characterize high-quality RDRs focused on ethical and legal issues, governance, communication of activities and results, established procedures to regulate access to data and security, and established plans to ensure long-term sustainability. Conclusions: The quality of RDRs is usually associated with a good oversight and governance mechanism and with durable funding. The results suggest that RDRs would benefit from support in management, information technology, epidemiology, and statistics.

The cancer registry software market is projected to be worth US$ 87.4 million in 2024. The market is anticipated to reach US$ 236.0 million by 2034. The market is further expected to surge at a CAGR of 10.4% during the forecast period 2024 to 2034.

Attributes	Key Insights
Cancer Registry Software Market Estimated Size in 2024	US$ 87.4 million
Projected Market Value in 2034	US$ 236.0 million
Value-based CAGR from 2024 to 2034	10.4%

Country-wise Insights

Countries	Forecast CAGRs from 2024 to 2034
The United States	10.5%
China	11.1%
The United Kingdom	11.5%
Japan	11.8%
Korea	13.2%

Category-wise Insights

Category	CAGR through 2034
On Premise	10.3%
Commercial Database	10.2%

Report Scope

Attribute	Details
Estimated Market Size in 2024	US$ 87.4 million
Projected Market Valuation in 2034	US$ 236.0 million
Value-based CAGR 2024 to 2034	10.4%
Forecast Period	2024 to 2034
Historical Data Available for	2019 to 2023
Market Analysis	Value in US$ million
Key Regions Covered	North America Latin America Western Europe Eastern Europe South Asia and Pacific East Asia The Middle East & Africa
Key Market Segments Covered	Deployment Model Database Type End User Region
Key Countries Profiled	The United States Canada Brazil Mexico Germany France France Spain Italy Russia Poland Czech Republic Romania India Bangladesh Australia New Zealand China Japan South Korea GCC countries South Africa Israel
Key Companies Profiled	C/NET Solutions Conduent Inc. Electronic Registry System Inc. Elekta Himagine solutions IBM Corporation McKesson Corporation NeuralFrame, Inc. Onco Inc. Ordinal Data Inc. Rocky Mountain Cancer Data Systems

Comprehensive dataset of 1 Intellectual property registries in North Dakota, United States as of July, 2025. Includes verified contact information (email, phone), geocoded addresses, customer ratings, reviews, business categories, and operational details. Perfect for market research, lead generation, competitive analysis, and business intelligence. Download a complimentary sample to evaluate data quality and completeness.

Comprehensive dataset of 30 Company registries in State of Paraná, Brazil as of July, 2025. Includes verified contact information (email, phone), geocoded addresses, customer ratings, reviews, business categories, and operational details. Perfect for market research, lead generation, competitive analysis, and business intelligence. Download a complimentary sample to evaluate data quality and completeness.

READ is EPA's authoritative source for information about Agency information resources, including applications/systems, datasets and models. READ is one component of the System of Registries (SoR).

The Fireshed Registry is a geospatial dashboard and decision tool built to organize information about wildfire transmission to buildings and monitor progress towards risk reduction for communities from management investments. The concept behind the Fireshed Registry is to identify and map the source of risk rather than what is at risk across all lands in the United States. While the Fireshed Registry was organized around mapping the source of fire risk to communities, the framework does not preclude the assessment of other resource management priorities and trends such as water, fish and aquatic or wildlife habitat, or recreation. The Fireshed Registry is also a multi-scale decision tool for quantifying, prioritizing, and geospatially displaying wildfire transmission to buildings in adjacent or nearby communities. Fireshed areas in the Fireshed Registry are approximately 250,000 acre accounting units that are delineated based on a smoothed building exposure map of the United States. These boundaries were created by dividing up the landscape into regular-sized units that represent similar source levels of community exposure to wildfire risk. Subfiresheds are approximately 25,000 acre accounting units nested within firesheds. Firesheds for the Conterminous U.S., Alaska, and Hawaii were generated in separate research efforts and are published in incremental versions in the Research Data Archive. They are combined here for ease of use.

The global standalone cancer registry software market is anticipated to grow significantly in the coming years, driven by the rising incidence of cancer, increasing awareness about the importance of cancer registration, and the growing adoption of electronic health records (EHRs) in healthcare settings. The market is estimated to be worth USD XX million in 2025 and is projected to reach USD XX million by 2033, exhibiting a CAGR of XX% during the forecast period. The market is segmented based on application, type, and region. The hospital segment held the largest market share in 2025, and is expected to maintain its dominance throughout the forecast period. The public database segment is expected to witness the highest growth rate during the forecast period, owing to the increasing adoption of public cancer registries to collect and manage cancer data. Geographically, North America held the largest market share in 2025, and is anticipated to continue its dominance throughout the forecast period. The Asia Pacific region is projected to witness the highest growth rate during the forecast period, due to the growing incidence of cancer and the increasing adoption of cancer registry software in healthcare settings. Major players in the market include McKesson Corporation, Elekta, C/NET Solutions, Electronic Registry Systems, Rocky Mountain Cancer Data Systems, and Onco.

Comprehensive dataset of 3 Civil registries in Canada as of July, 2025. Includes verified contact information (email, phone), geocoded addresses, customer ratings, reviews, business categories, and operational details. Perfect for market research, lead generation, competitive analysis, and business intelligence. Download a complimentary sample to evaluate data quality and completeness.

The Clinical Trials Registry and Results Database compiles information on publicly and privately supported clinical trial studies on a wide range of diseases and conditions. Its main goal is to provide an easy access to both privately and publicly funded clinical trials information for patients, their family members, healthcare professionals, researchers, and the public.

The Dutch Heart Registry is a service-oriented quality and registration organization where a high-quality and complete registration of all heart interventions and heart operations in the Netherlands takes place. In addition, registrations are also designed for various, frequently occurring syndromes.

The Dutch Heart Registry (NHR) maintains national registrations on behalf of the participating hospitals, which are represented by mandated physicians. The doctors and hospitals aim to monitor and promote quality of care in the cardiological and cardiac surgery field with these registrations and the mirror information provided by the NHR on the basis of them. The mandated doctors from the hospitals provide substantive direction to the quality registrations. This is done in collaboration with the NVVC and NVT, with whom the NHR also has intensive coordination at policy level.

The Province of Ontario Neurodevelopmental Disorders (POND) Network is an Integrated Discovery Program funded by the Ontario Brain Institute, and aims to understand the neurobiology of neurodevelopment disorders and translate the findings into effective new treatments. Neurodevelopmental disorders investigated as part of this program include attention deficit/hyperactivity disorder, autism spectrum disorder, intellectual disability, obsessive compulsive disorder, Tourette syndrome, Rett syndrome, Down syndrome, Fragile X syndrome and any other genetic differences associated with neurodevelopmental disorder difficulties.

Cloud-Based Rare Disease Family Registry Market Outlook

According to our latest research and analysis, the global cloud-based rare disease family registry market size reached USD 1.12 billion in 2024, driven by an increasing focus on precision medicine, collaborative research, and digital health transformation. The market is expected to demonstrate robust growth, registering a CAGR of 15.7% from 2025 to 2033, and is projected to attain a value of USD 3.67 billion by 2033. This growth trajectory is primarily fueled by the expanding adoption of cloud-based technologies in healthcare, the rising prevalence of rare diseases, and the growing need for efficient patient data management and research collaboration globally.

One of the most significant growth factors for the cloud-based rare disease family registry market is the increasing incidence and identification of rare diseases worldwide. Over 400 million people are estimated to be affected by rare diseases globally, necessitating robust data management and patient tracking solutions. Cloud-based registries facilitate the collection, storage, and analysis of vast amounts of patient and genetic data, enabling healthcare providers and researchers to identify patterns, accelerate diagnosis, and improve patient outcomes. The interoperability and scalability of cloud platforms allow for seamless integration with various healthcare systems and databases, which is crucial for rare disease research that often requires collaboration across multiple institutions and geographies.

Another key driver is the growing emphasis on patient-centric care and precision medicine. Cloud-based rare disease family registries empower patients, families, and advocacy groups to actively participate in data sharing, thereby fostering a collaborative ecosystem that supports research and therapeutic development. These registries provide a centralized platform for patients and their families to contribute health information, genetic data, and clinical outcomes, which are invaluable for researchers and pharmaceutical companies developing targeted therapies. Additionally, regulatory agencies and healthcare policymakers are increasingly recognizing the value of such registries in post-marketing surveillance and real-world evidence generation, further propelling market growth.

Technological advancements in cloud computing and data security are also catalyzing the expansion of the cloud-based rare disease family registry market. The deployment of advanced encryption, blockchain, and artificial intelligence (AI) tools ensures data privacy and enhances analytical capabilities, making cloud-based platforms more attractive to stakeholders. The ability to rapidly scale storage and processing resources in response to growing data volumes, coupled with reduced infrastructure costs compared to on-premises solutions, is encouraging hospitals, research institutes, and pharmaceutical companies to transition to cloud-based registries. Furthermore, the COVID-19 pandemic underscored the need for remote data access and digital collaboration, accelerating the adoption of cloud-based solutions in rare disease management.

From a regional perspective, North America dominates the cloud-based rare disease family registry market, accounting for over 38% of global revenue in 2024, followed by Europe and the Asia Pacific. The United States, in particular, benefits from a well-established healthcare IT infrastructure, significant investments in rare disease research, and strong regulatory support for data sharing initiatives. Europe is witnessing substantial growth driven by cross-border research collaborations and supportive government policies. Meanwhile, the Asia Pacific region is emerging as a high-growth market due to increasing awareness, improving healthcare infrastructure, and rising investments in genomics and digital health.

Component Analysis

The cloud-based rare disease family registry market by component is segmented into software and services,

IntroductionClinical trial registries serve a key role in tracking the trial enterprise. We are interested in the record of trials sites in India. In this study, we focused on the European Union Clinical Trial Registry (EUCTR). This registry is complex because a given study may have records from multiple countries in the EU, and therefore a given study ID may be represented by multiple records. We wished to determine what steps are required to identify the studies that list sites in India that are registered with EUCTR.MethodsWe used two methodologies. Methodology A involved downloading the EUCTR database and querying it. Methodology B used the search function on the registry website.ResultsDiscrepant information, on whether or not a given study listed a site in India, was identified at three levels: (i) the methodology of examining the database; (ii) the multiple records of a given study ID; and (iii) the multiple fields within a given record. In each of these situations, there was no basis to resolve the discrepancy, one way or another.DiscussionThis work contributes to methodologies for more accurate searches of trial registries. It also adds to the efforts of those seeking transparency in trial data.