Cloud-Based Rare Disease Family Registry Market Report 2025

The cloud-based rare disease family registry market size has grown rapidly in recent years. It will grow from $1.19 billion in 2024 to $1.4 billion in 2025 at a compound annual growth rate (CAGR) of 17.8%. The growth observed during the historic period can be linked to the rising number of drug approvals, increasing demand for healthcare digitization, greater use of advanced data analytics, expanding adoption of provider-entered (site-based) registries, and growing demand for real-world evidence (RWE).

The cloud-based rare disease family registry market size is expected to see rapid growth in the next few years. It will grow to $2.68 billion in 2029 at a compound annual growth rate (CAGR) of 17.6%. The growth projected for the forecast period can be attributed to increased integration of AI-driven analytics, greater use of registries by pharmaceutical companies for post-marketing surveillance, rising demand for modular and specialty-specific registries, enhanced patient engagement through portals and remote tools, and growing adoption of health information exchange (HIE) and interoperability standards. Key trends during the forecast period include integration of wearables and IoT devices, development of blockchain solutions for secure data sharing, advancement of telehealth and remote monitoring integration, innovation in EHR-registry interoperability, investment in standardization, and expansion of patient-driven data collection.

The growing emphasis on precision medicine is expected to accelerate the growth of the cloud-based rare disease family registry market. Precision medicine tailors medical treatment and prevention strategies based on an individual’s genetic, environmental, and lifestyle factors. Advances in genomic sequencing have enabled more accurate insights into patients’ genetic makeup, driving the adoption of precision medicine. Cloud-based rare disease family registries contribute to this by centralizing comprehensive patient data, including genetic, clinical, and treatment information, which supports personalized healthcare. For example, in February 2024, the Personalized Medicine Coalition reported that the FDA approved 16 new personalized therapies for rare diseases in 2023, a significant increase from the six approvals in 2022. These new therapies include treatments for cancer and other conditions, highlighting the growing focus on precision medicine. As a result, this trend is fueling the expansion of the cloud-based rare disease family registry market.

Companies operating in the cloud-based rare disease family registry market are introducing technological innovations, such as bilingual federated registries, to enhance patient, family, and researcher engagement. Bilingual federated registries are cloud-based systems that allow data to remain at local sites while supporting multiple languages and adhering to regional consent and privacy regulations. For example, in June 2025, the National Organization for Rare Disorders (NORD) announced plans to launch two Canadian patient registries for PKU and MPS. These registries, created in collaboration with Canadian advocacy groups, clinicians, and researchers, will be the first outside the U.S. in the IAMRARE Program. They will comply with provincial consent laws, enable real-time data collection and analysis, and support research into rare metabolic disorders, clinical trials, and patient recruitment.

In May 2025, Vora Ventures, a US-based equity firm, acquired Hive Networks Inc. to extend its reach in the rare and chronic disease research space. Hive Networks, a healthcare technology company, provides a cloud-based AI-powered platform for collaboration among patients, families, clinicians, and researchers. This acquisition is aimed at improving collaboration, data sharing, and patient outcomes in the rare and chronic disease sectors by leveraging Hive Networks’ platform as a collaborative infrastructure for secure data exchange.

Major players in the cloud-based rare disease family registry market are Thermo Fisher Scientific Inc., IQVIA Holdings Inc., ICON plc, Syneos Health Inc., Parexel International Corp., Medidata Solutions Inc., FIGMD Inc., OM1 Inc., Mission Health Labs Inc., TREAT-NMD Global Registries Platform, Seqster PDM Inc., ArborMetrix Inc., OpenClinica LLC, Pulse Infoframe Inc., Oracle Healthcare Pvt. Ltd., QuesGen Systems Inc., FTD Disorders Registry, Castor LLC, Data Registry Services LLC, Fibrolamellar Registry, Rare Central.

North America was the largest region in the cloud-based rare disease family registry market in 2024. Asia-Pacific is expected to be the fastest-growing region in the forecast period. The regions covered in cloud-based rare disease family registry report are Asia-Pacific, Western Europe, Eastern Europe, North America, South America, Middle East and Africa. The countries covered in the cloud-based rare disease family registry market report are Australia, Brazil, China, France, Germany, India, Indonesia, Japan, Russia, South Korea, UK, USA, Canada, Italy, Spain.

Note that the outlook for this market is being affected by rapid changes in trade relations and tariffs globally. The report will be updated prior to delivery to reflect the latest status, including revised forecasts and quantified impact analysis. The report’s Recommendations and Conclusions sections will be updated to give strategies for entities dealing with the fast-moving international environment.

The sudden escalation of U.S. tariffs and the consequent trade frictions in spring 2025 are severely impacting the healthcare sector, particularly in the supply of critical medical devices, diagnostic equipment, and pharmaceuticals. Hospitals and healthcare providers are facing higher costs for imported surgical instruments, imaging equipment, and consumables such as syringes and catheters, many of which have limited domestic alternatives. These increased costs are straining healthcare budgets, leading some providers to delay equipment upgrades or pass on expenses to patients. Additionally, tariffs on raw materials and components are disrupting the production of essential drugs and devices, causing supply chain bottlenecks. In response, the industry is diversifying sourcing strategies, boosting local manufacturing where possible, and advocating for tariff exemptions on life-saving medical products.

A cloud-based rare disease family registry is an online platform designed to securely collect, store, and manage health and family information related to rare diseases. It enables patients, families, and healthcare professionals to share data remotely, supporting research, improving patient care, and facilitating clinical trial recruitment.

The primary components of a cloud-based rare disease family registry include software and services. Software consists of programs, data, and instructions that guide a computer or device in performing specific tasks. Deployment options include public cloud, private cloud, and hybrid cloud solutions. Applications include patient data management, research, clinical trials, genetic data collection, and others. End users include hospitals and clinics, research institutions, pharmaceutical and biotechnology companies, patient advocacy groups, and other stakeholders.

The cloud-based rare disease family registry market research report is one of a series of new reports that provides cloud-based rare disease family registry market statistics, including the cloud-based rare disease family registry industry global market size, regional shares, competitors with the cloud-based rare disease family registry market share, detailed cloud-based rare disease family registry market segments, market trends, and opportunities, and any further data you may need to thrive in the cloud-based rare disease family registry industry. This cloud-based rare disease family registry market research report delivers a complete perspective of everything you need, with an in-depth analysis of the current and future scenarios of the industry.

The cloud-based rare disease family registry market consists of revenues earned by entities by providing services such as data hosting, data integration, data security, data sharing, data analytics, data storage, interoperability support, registry customization, patient engagement support, technical support, and training services, maintenance services. The market value includes the value of related goods sold by the service provider or included within the service offering. The cloud-based rare disease family registry market also includes sales of data storage devices, networking equipment, diagnostic kits, biometric devices, patient monitoring devices, data backup systems, security hardware, computing workstations, and mobile devices. Values in this market are ‘factory gate’ values, that is the value of goods sold by the manufacturers or creators of the goods, whether to other entities (including downstream manufacturers, wholesalers, distributors and retailers) or directly to end customers. The value of goods in this market includes related services sold by the creators of the goods.

The market value is defined as the revenues that enterprises gain from the sale of goods and/or services within the specified market and geography through sales, grants, or donations in terms of the currency (in USD unless otherwise specified).

The revenues for a specified geography are consumption values that are revenues generated by organizations in the specified geography within the market, irrespective of where they are produced. It does not include revenues from resales along the supply chain, either further along the supply chain or as part of other products.

This product will be delivered within 3-5 business days.