Part 2 of a 5 Part Series on Patient Registries (Plus, download the free 8-page Guide to Patient Registries)
There are many active patient registries, representing diverse patient populations and varied goals.1 Registries may be hosted and maintained by government entities, academic institutions, private companies, patient advocacy groups, or some combination thereof.
For many conditions, disease-specific resources— including patient registry information—can be found via the Centers for Disease Control and Prevention. The CDC’s Diseases and Conditions page includes a searchable A-Z index and links to popular health topics. Searching for a specific disease (Spina Bifida, for example) links users to the CDC’s resources for the condition, including information about patient registries where applicable. The CDC’s Data & Statistics page provides links to data, research tools and resources, and related organizations concerned with disease tracking, surveillance and statistics.
The CDC also maintains the Agency for Toxic Substances and Disease Registry, which is searchable and contains an A-Z Index listing all diseases and substances included in the registry. For example, ATSDR maintains disease registries for conditions such as ALS; registry information for specific outbreaks, such as the 2006 Polycythemia Vera investigation in Pennsylvania; and event-specific registries, such as the 9/11 Health website (developed in conjunction with the New York City Health Department). ATSDR also maintains a Rapid Response Registry, which is essentially a registry-of-registries allowing public health and disaster response agencies to quickly establish patient registries in the event of toxic exposures during catastrophic events.
As part of its Meaningful Use guidelines, the CDC provides Specialized Registry guidelines for public health professionals. Detailed information is available regarding specialized registries for cancer and immunization (including a list of state immunization registry contacts). The National Institutes of Health provide a number of patient registry resources. A List of Registries is available via the Health Information section of the NIH website, designed to provide “information about registry efforts at the national level.”
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The National Institutes of Health / National Center for Advancing Translational Sciences maintains the Global Rare Diseases Patient Registry Data Repository/GRDR®, which is a sort of mega-registry integrating patient information from various rare disease registries. The initial phase of the project, completed in 2013, included data from 12 patient advocacy group registries. GRDR® partners include several disease-specific patient registries and the international Sanford Research Coordination of Rare Diseases at Sanford (CoRDS) registry, which itself hosts a number of additional disease-specific registries. Other GRDR® collaborators include RD-Connect, IRDiRC (International Rare Diseases Research Consortium), and Orphanet. (The NCATS staff continues work on the project, with the goal of further developing the GRDR® program.) The Agency for Healthcare Research and Quality maintains the Registry of Patient Registries (RoPR), which is a database system compatible with ClinicalTrials.gov and searchable by the public. The RoPR site itself is temporarily unavailable due to re-design, but is expected to re-launch sometime in early 2016. Clinical Leader discusses the ways this resource can be used in clinical trials and collaboration.
PatientCrossroads is a patient registry company, housing a collection of registries on over 400 conditions. The company acts as a “third party gatekeeper” to gather patient-provided data, store it, ensure accessibility and make available de-identified information for research. The platform also allows surveys and other targeted requests for information to be shared with participating patients, as well as private data storage for organizations or advocacy groups. Patients maintain ownership of the data (empowering effective patient access), but de-identified information is made available to researchers and other participants. The site maintains a Registries page listing the various programs and registries available on the site, as well as resources targeted to specific interest groups including Patients & Families, Advocates, Industry and Researchers.
GenomeConnect, which was developed by the Clinical Genome (ClinGen) Resource and is hosted by PatientCrossroads, allows patients to share de-identified genetic and health information for research purposes.
The National Organization for Rare Disorders recently announced the FDA-grant-funded Natural History Study Project, a patient registry initiative designed to further the study of rare diseases. Additional information about NORD’s rare disease registries can be found here. The Patient-Centered Outcomes Research Institute funds clinical outcomes research using patient-centered data, including patient registries. PCORI’s Clinical Data and Patient-Powered Research Networks—Awarded Projects page provides a directory of current projects. For additional information about navigating patient registries, FasterCures, a center of the Milken Institute whose mission is to accelerate and improve medical research, offers an explanatory article and infographic, Navigating the Landscape of Patient Registries. A recent MedPage Today article provides insight into current challenges and issues surrounding patient registries, including physician-driven initiatives.
CONTACT REGISTRIES
A related resource, the contact registry, is a collection of contact information for a group of people who share a common health-related interest or diagnosis. Contact registries are also critical to research, as individuals in a contact registry typically agree to be contacted for clinical research opportunities.A number of contact registries exist, with the goal of connecting patients with studies or clinical trials. NCATS maintains the Rare Disease Clinical Research Network (RDCRN) Contact Registry, which connects rare-disease patients and family members with information about research studies they may be eligible to join. ResearchMatch is a similar service, developed by a network of academic institutions and partner organizations.
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