2025-2034 Cloud-Based Rare Disease Family Registry Market Evolution: Disruptions, Innovations, and Untapped Opportunities

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What Is the Expected CAGR for the Cloud-Based Rare Disease Family Registry Market Through 2025?
The market size for the cloud-based rare disease family registry has seen fast-paced growth in recent years. This market is projected to expand from $1.19 billion in 2024 to $1.40 billion in 2025, showcasing a compound annual growth rate (CAGR) of 17.8%. The significant growth during the historical period is attributable to a surge in drug approvals, an escalating demand for healthcare digitization, the rising application of advanced data analytics, the expanding use of provider-entered (site-based) registry, and the increasing demand for real-world evidence (RWE).

What's the Projected Size of the Global Cloud-Based Rare Disease Family Registry Market by 2029?
In the coming years, the market size for the cloud-based rare disease family registry is anticipated to experience swift expansion, reaching $2.68 billion in 2029 with a compound annual growth rate (CAGR) of 17.6%. Factors contributing to this estimated growth for the forecasted period include increased integration of AI-driven analytics, heightened usage of registries by pharmaceutical companies post-marketing, increased popularity of modular, specialty-focused registries, increased patient involvement through online portals and remote tools, as well as a rise in health information exchange (HIE) and interoperability standards. Leading trends projected for this period include wearable and IoT device integration, blockchain development for secure data exchange, advancements in telehealth and remote monitoring integration, innovations in EHR-registry interoperability, investments in standardization processes, and a shift towards patient-driven data collection.

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Top Growth Drivers in the Cloud-Based Rare Disease Family Registry Industry: What's Accelerating the Market?
As the emphasis on precision medicine intensifies, the expansion of the cloud-based rare disease family registry market is anticipated to be driven. Precision medicine is an individualised approach to treatment and prevention, taking into account a person's genetic, environmental, and lifestyle factors. Its prevalence is growing due to advancements in genomic sequencing, which allows for a more accurate understanding of a patient's genetic structure. Cloud-based registries for rare disease families support this by amassing and centralizing comprehensive patient data, encompassing genetic, clinical, and treatment specifics. Notably, in February 2024, the US non-profit organization, Personalized Medicine Coalition, indicated that the US-based federal agency, the Food and Drug Administration (FDA), authorized 16 new personalised therapeutic solutions for individuals with rare diseases in 2023. This marked a significant increase from six approvals in 2022, with seven of these latest treatments targeting cancer, and three focusing on other diseases and conditions. Consequently, the escalating focus on precision medicine is fuelling the growth of the cloud-based rare disease family registry market.

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What Trends Will Shape the Cloud-Based Rare Disease Family Registry Market Through 2029 and Beyond?
Leading businesses in the cloud-based rare disease family registry market are progressing technological enhancements, like bilingual federated registries, in order to offer patients, families, and researchers robust, multi-location data platforms that boost participation and facilitate real-time data gathering and evaluation. Such a registry is a cloud-based solution that keeps data at local sites while enabling multi-language support and adherence to local consent and privacy rules. For instance, in June 2025, the National Organization for Rare Disorders (NORD), a U.S. nonprofit, intended to debut two Canadian patient registries for PKU and MPS. These registries, created in collaboration with Canadian patient advocacy groups, researchers, and clinicians, are the first in the IAMRARE Program to be hosted outside the U.S. They are planned to fulfill provincial consent conditions, promote cooperative real-time data collection and evaluation, and contribute to speeding up research, enhancing knowledge of rare metabolic disorders, and simplifying the recruitment of participants for clinical trials.

What Are the Main Segments in the Cloud-Based Rare Disease Family Registry Market?
The cloud-based rare disease family registry market covered in this report is segmented as

1) By Component: Software, Services
2) By Deployment Mode: Public Cloud, Private Cloud, Hybrid Cloud
3) By Application: Patient Data Management, Research, Clinical Trials, Genetic Data Collection, Other Applications
4) By End-User: Hospitals And Clinics, Research Institutes, Pharmaceutical And Biotechnology Companies, Patient Advocacy Groups, Other End-Users

Subsegments:
1) By Software: Electronic Data Capture, Data Management Platform, Analytics And Reporting Tools, Patient Engagement Tools, Clinical Trial Management System
2) By Services: Implementation And Integration, Training And Support, Data Hosting And Security, Consulting Services, Maintenance And Upgrades

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Which Top Companies are Driving Growth in the Cloud-Based Rare Disease Family Registry Market?
Major companies operating 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.

Which Regions Will Dominate the Cloud-Based Rare Disease Family Registry Market Through 2029?
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.

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