INDIVO as a Personally-Controlled         Research Platform for Chronic          Disease Registries ResearchMarc D. Natter...
Going ‘Retro’:Translating Research into Improved      Care through Registries• Cystic Fibrosis Foundation   – LeRoy Matthe...
The Pediatric Oncology Story:                         Protocol-Based Care, 1981-1991•   Patients enrolled on SPOG/POG Prot...
ATSDR: Agency for Toxic Substances &Disease RegistryFIC: Fogarty International Center                                     ...
Registries and Reasons:Juvenile Idiopathic Arthritis & Risk for Eye Disease
CARRAnet Grand Opportunities Grant       National RegistryNIAMS RC2AR058934, Sites=56, Current Enrollment>7,000 (Target 20K)
CARRAnet: Building ‘Grass Roots’ Access     to Subspecialty Research Data Software as a Service model: server farm provid...
CARRAnet Researcher Portal
Still in Search of a System that is:– Convenient for data input:  • Patients and research subjects, not just for investiga...
Incorporating Patient-Reported Outcomes  (NLM R01 – Mandl, Weitzman, Natter)                      Harvard          Childre...
Contact and Personally-identifying        Information Management– Provides a Unique Identifier for all subjects across  al...
Use Cases:  Juvenile Arthritis + Eye Disease Registries Collaboration• Inception cohort of 650 children with  JIA followed...
New Registry Applications,                  under Development• M-CM Network: Patient-advocate  initiated registry for an e...
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Indivo as a Personally-Controlled Research Platform for Chronic Disease Registries Research

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Lightning talk at the Indivo X 2012 User's Conference: embedding Indivo in the CARRAnet registry provides personal control and patient engagement in research systems. By Marc Natter, MD, Fellow at the Intelligent Health Lab, Children's Hospital Informatics Program.

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  • One small field in medicine has been far ahead of most others in measuring the performance of its practitioners: cystic-fibrosis care. For forty years, the Cystic Fibrosis Foundation has gathered detailed data from the country's cystic-fibrosis treatment centers. It did not begin doing so because it was more enlightened than everyone else. It did so because, in the nineteen-sixties, a pediatrician from Cleveland named LeRoy Matthews was driving people in the field crazy. Matthews had started a cystic-fibrosis treatment program as a young pulmonary specialist at Babies and Children's Hospital, in Cleveland, in 1957, and within a few years was claiming to have an annual mortality rate that was less than two per cent. To anyone treating CF at the time, it was a preposterous assertion. National mortality rates for the disease were estimated to be higher than twenty per cent a year, and the average patient died by the age of three. Yet here was Matthews saying that he and his colleagues could stop the disease from doing serious harm for years. "How long [our patients] will five remains to be seen, but I expect most of them to come to my funeral," he told one conference of physicians. In 1964, the Cystic Fibrosis Foundation gave a University of Minnesota pediatrician named Warren Warwick a budget of ten thousand dollars to collect reports on every patient treated at the thirty-one CF centers in the United States that year--data that would test Matthews's claim. Several months later, he had the results: the median estimated age at death for patients in Matthews's center was twenty-one years, seven times the age of patients treated elsewhere. He had not had a single death among patients younger than six in at least five years. Unlike pediatricians elsewhere, Matthews viewed CF as a cumulative disease and provided aggressive treatment long before his patients became sick. He made his patients sleep each night in a plastic tent filled with a continuous, aerosolized water mist so dense you could barely see through it. This thinned the tenacious mucus that clogged their airways and enabled them to cough it up. Like British pediatricians, he also had family members clap on the children's chests daily to help loosen the mucus. After Warwick's report came out, Matthews's treatment quickly became the standard in this count. The American Thoracic Society endorsed his approach, and Warwick's data registry on treatment centers proved to be so useful that the Cystic Fibrosis Foundation has continued it ever since.
  • Indivo as a Personally-Controlled Research Platform for Chronic Disease Registries Research

    1. 1. INDIVO as a Personally-Controlled Research Platform for Chronic Disease Registries ResearchMarc D. Natter, MDProject Manager, CARRAnet Informatics Development CoreFellow, Intelligent Health LabKenneth D. Mandl, MD MPHPI & Director, CARRAnet Informatics Development CoreDirector, Intelligent Health LabIntelligent Health Lab & Children’s Hospital Informatics Program, Children’s Hospital BostonCenter for Biomedical Informatics, Harvard Medical SchoolJune 18, 2012 Harvard Children’s Hospital Medical School Informatics Program
    2. 2. Going ‘Retro’:Translating Research into Improved Care through Registries• Cystic Fibrosis Foundation – LeRoy Matthews, Warren Warwick, Don Berwick, and others Left: Gawande A, The Bell Curve. New Yorker Magazine 12/2004 Right: http://www.nytimes.com/2009/12/22/health/22cyst.html
    3. 3. The Pediatric Oncology Story: Protocol-Based Care, 1981-1991• Patients enrolled on SPOG/POG Protocol: Survival = 76%, N=120• Patients not enrolled in study: Survival = 52%, N = 42Sources:1. Wagner HP, et al.Childhood NHL inSwitzerland: incidenceand survival of 120study and 42 non-studypatients. MedPediatrOncol. 1995May; 24(5):279-80.2. SharonMurphy, PediatricOncologyGroup, personalcommunication
    4. 4. ATSDR: Agency for Toxic Substances &Disease RegistryFIC: Fogarty International Center NIH & CDC Registry-related Project Funding:NCBBB: Natl Center on Birth Defects & FY 2009 active projects by Institute or CenterDevelopmental DisabilitiesNCCDPDP: Natl Center for Chronic Disease (cumulative since 1992, in millions, FY 2008 CPI-adjusted dollars)Prevention & Health PromotionNCI: National Cancer Institute NIDDK, $188.0NCPDCID: Natl Center for NIAMS, $157.1Preparedness, Detection, & Control of NIMH, $202.4Infectious Diseases NIAAA, $139.6NCRR: Natl Center for Research ResourcesNEI: National Eye Institute NIAID, $82.0NHLBI: Natl Heart, Lung, & Blood InstituteNIA: National Institute on Aging NHLBI, $243.3NIAAA: Natl Inst on Alcohol Abuse & NINDS, $81.7 NIDA, $29.8AlcoholismNIAID: Natl Institute of Allergy & Infectious NCBDD, $28.3Diseases NCRR, $24.9NIAMS: Natl Institute of Arthritis & NIDCD, $19.3Musculoskeletal & Skin Diseases NIA, $378.9 NIDCR, $16.4NIBIB: Natl Institute of Biomedical Imaging& Bioengineering ATSDR, $16.0NICHD: Natl Institute of Child Health & Other, $179.6 NICHD, $12.7Human Development NIEHS, $9.9NIDA: Natl Institute on Drug Abuse NIGMS, $9.3NIDCD: Natl Institute on Deafness & OtherCommunication Disorders NIOSH, $7.5 NCCDPHP, $707.9NIDCR: Natl Institute of Dental & NCPDCID, $2.1Craniofacial Research NIBIB, $1.6NIDDK: Natl Institute of Diabetes & NCI, $801.4 NEI, $1.2Digestive & Kidney DisesesNIEHS: Natl Institute of Environmental NLM, $0.5Health Sciences FIC, $0.1NIGMS: Natl Institute of General MedicalSciencesNIMH: Natl Institute of Mental HealthNINDS: Natl Institute of Neurological Grand Total: $3.162 BillionDisorders & StrokeNIOSH: Natl Institute for Occupational *NIH grants & contracts: FY 1992-2009;Safety & Health CDC grants & contracts: FY 1995-2009NLM: National Library of Medicine
    5. 5. Registries and Reasons:Juvenile Idiopathic Arthritis & Risk for Eye Disease
    6. 6. CARRAnet Grand Opportunities Grant National RegistryNIAMS RC2AR058934, Sites=56, Current Enrollment>7,000 (Target 20K)
    7. 7. CARRAnet: Building ‘Grass Roots’ Access to Subspecialty Research Data Software as a Service model: server farm provides a SHRINE self-scaling, connected, but private i2b2 ‘cloud’ Data In  InForm electronic data capture using standardized forms (for now)  InForm using custom forms (add-on studies) – near future  Import study data (raw data files plus data mappings – spreadsheets, databases, etc) – on the horizon Study C Modular Study A Study B Data Sets, Enhanced Data Set Shared Ontologies Common Data Set
    8. 8. CARRAnet Researcher Portal
    9. 9. Still in Search of a System that is:– Convenient for data input: • Patients and research subjects, not just for investigators • Online consenting for studies– Manages personal health information for research– Returns data to research subjects and consented 3rd parties Harvard Children’s Hospital Medical School Informatics Program
    10. 10. Incorporating Patient-Reported Outcomes (NLM R01 – Mandl, Weitzman, Natter) Harvard Children’s Hospital Medical School Informatics Program 10
    11. 11. Contact and Personally-identifying Information Management– Provides a Unique Identifier for all subjects across all CARRA/CARRAnet studies– Data under site control– Web-based, centrally hosted– Based on INDIVO • Fine-grained permissions for patient, guardians, family members, care providers, etc • Subjects can directly enter and update their own data • SMArt, ‘research app’ based approach Harvard Children’s Hospital Medical School Informatics Program
    12. 12. Use Cases: Juvenile Arthritis + Eye Disease Registries Collaboration• Inception cohort of 650 children with JIA followed for 5 years• Technical aims: – Subjects enter and manage contact info – Match subjects across two different registries without exchanging contact or personally identifying info – Data exchange between registries – Introduce ‘low-cost’ consent process Harvard Children’s Hospital Medical School Informatics Program
    13. 13. New Registry Applications, under Development• M-CM Network: Patient-advocate initiated registry for an especially rare disease• FDA Reporting App: 3rd party reporting from patient registries• Ad-hoc Adverse Events Reporting: Post-marketing surveillance studies• Consensus Treatment Plan Adherence Tool: Collaborative patient-physician views

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