Appendix BRegistry and Stakeholder Participants
Atrial Fibrillation
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| Registry | Representative(s) |
|---|
| A Novel Healthcare Information Technology Tool to Improve Care in Patients with Atrial Fibrillation (AFCare) | Jonathan Hsu |
| American Medical Association-Physician Consortium for Performance Improvement (AMA-PCPI) | Jamie Jouza |
| American Heart Association Get with The Guidelines - Afib | William Lewis |
| Bristol-Myers Squib | Lisa Rosenblatt |
| Does Atrial Fibrillation (AF) Termination Without Additional Ablation Influence Outcome? (TARGET) | Mitra Mohanty |
| GARFIELD AF | Gloria Kayani |
| Heart Rhythm Society | Laura Blum |
| Left Atrial Appendage Occlusion Registry (LAAO) | Lara Slattery |
| Medtronic | Robert Kowal |
| Outcomes Registry for Better Informed Treatment of Atrial Fibrillation II (ORBIT-AF II) | Jonathan Piccini |
| PCORI PATH Atrial Fibrillation Cohort | Saman Nazarian |
| PINNACLE (ACC) | Lara Slattery |
| Registry on WATCHMAN Outcomes in Real-Life Utilization (EWOLUTION) | Elisa Vireca |
| Stanford / Retrospective Evaluation and Assessment of Therapies in AF (TREAT-AF) | Mintu Turakhia |
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| Stakeholder Organization | Representative(s) |
|---|
| Centers for Medicare & Medicaid Services | Kevin Larson and Reena Duseja |
| U.S. Food and Drug Administration | Danica Marinac-Dabic |
| Geisinger | Brent Williams |
| Lahey Clinic | Matthew Reynolds |
| National Library of Medicine | Lisa Lang |
| National Quality Forum | Kyle Cobb |
| StopAfib.org | Mellanie True Hills |
| U.S. Department of Veterans Affairs | David Atkins |
Asthma
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| Registry | Representative(s) |
|---|
| AAAAI Allergy, Asthma and Immunology Quality Clinical Data Registry | Sheila Heitzig |
| Capricorn Asthma Working Group | Sharmile Nyenhuis |
| Children’s Health Foundation Pediatric Asthma Registry | Julie Harris |
| Colorado Pediatric Collaborative Asthma Patient Registry | Maggie Reyes Leczinski |
| Duke Asthma Center | Loretta Que |
| Immune Interactions in Severe Asthma | Sally Wenzel |
| Kaiser Permanente | William Crawford |
| Longitudinal Observational Study of Severe Asthma | Amisha Barochia |
| Mechanisms of Response to Diesel Exhaust in Subjects with Asthma | Reynold Panettieri |
| MN Community Measurement | Collette Pitzen |
| Pulmonary Health and Deployment to Southwest Asia and Afghanistan | Eric Garshick |
| Severe Asthma Research Program III (WU SARPIII) | Mario Castro |
| The Genetics of Severe Asthma in Children | Christopher Carroll |
| Vitamin D, Steroids, and Asthma in African American Youth (AsthMaP2) | Robert Freishtat |
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| Stakeholder Organization | Representative(s) |
|---|
| Allergy Asthma Network Mothers of Asthmatics | Tonya Winders |
| American Thoracic Society | Patricia Finn |
| Asthma and Allergy Foundation of America | Deidre Washington |
| COPD Foundation | Elisha Malanga |
| Kaiser Permanente - Medical Groups in Northern California | Imran Junaid |
| Montefiore Asthma Center | Deepa Rastogi |
| National Quality Forum | Kyle Cobb |
| OCHIN | Erik Geissal and Anisha Abdul-Ali |
| Propeller Health | Leanne Kaye |
| The National Institute of Allergy and Infectious Diseases | Lisa Wheatley |
| The National Library of Medicine | Lisa Lang |
Depression
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| Registry | Representative(s) |
|---|
| American Psychiatry Association Registry | Phillip Wang |
| Dallas 2K: A Natural History Study of Depression | Madhukar Trivedi |
| HealthQuality.va.gov | Crowe Chris |
| Mental Health Research Network | Greg Simon |
| Minnesota Community Measurement | Collette Pitzen |
| Mood Patient Powered Research Network (MoodNetwork) | Andrew Alan Nierenberg |
| National Network of Depression Centers (NNDC) Mood Outcome Program | J. Raymond DePaulo, Jr. |
| NCQA - HEDIS | Mary Barton |
| PRIME Registry/American Board of Family Medicine | Lars Peterson |
| Treatment-Resistant Depression: A Narrative and Systematic Review of Definitions and Methods in Clinical Research Studies | Bradley Gaynes |
| Treatment-Resistant Depression Registry | Bryan Olin |
| University of Texas-Southwestern Depression Cohort: A Longitudinal Study of Depression | Madhukar Trivedi |
| Quantified Mobile Sensing for Improving Diagnosis and Measuring Disease Progression | Thilo Deckersbach |
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| Stakeholder Organization | Representative(s) |
|---|
| American Psychological Association | C. Vaile Wright |
| Blue Cross Blue Shield of Massachusetts | Rosemary Brown |
| Centers for Medicare & Medicaid Services | Kevin Larsen |
| Depression and Bipolar Support Alliance | Allen Doederlein |
| U.S. Food and Drug Administration | Danica Marinac-Dabic and WenHung Chen |
| International Foundation for Research and Education on Depression (iFRED) | Kathryn Goetzke |
| Menninger Clinic | M. Justin Coffey |
| National Alliance on Mental Illness | Paul Surgenor |
| National Cancer Institute | Ashley Wilder Smith |
| National Institute of Mental Health | Michael Freed |
| SAMSHA | Lisa Patton |
| National Library of Medicine | Lisa Lang |
| National Quality Forum | Kyle Cobb |
| OCHIN | Erik Geissal and Anisha Abdul-Ali |
| Providence St. Joseph Health/Swedish | Phil Capp |
| University of Michigan | Sagar Parikh |
Lung Cancer
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| Registry | Representative(s) |
|---|
| AACR Project GENIE | Seth Sheffler-Collins |
| Cancer Experience Registry (CER) | Joanne Buzaglo and Alexandra Zaleta |
| Cancer Research and Biostatistics | Kari Chansky |
| Genentech | Laura Chu and Sarika Ogale |
| National Comprehensive Cancer Network | Gregory Riely |
| National Institutes of Health | Lynne Penberthy |
| National Program of Cancer Registries | Loria Pollack |
| PANORAMA - Real World Molecular Testing, Treatment Patterns, and Clinical Outcomes EGFR Mutation-Positive NSCLC, AstraZeneca | Brian Seal |
| Prospective Study to Determine Impact of Early Palliative Care Consult on Quality of Life (QOL), Cancer Related Symptoms in Advanced Lung Cancer Patients: Thoracic Pilot Project | Sriram Yennu |
| RSSearch® Patient Registry | Joanne Davis |
| SBRT (Stereotactic Body Radiation Therapy) vs. Surgery in High Risk Patients with Early Stage Lung Cancer | Clifford Robinson |
| Society of Thoracic Surgeons | Felix Fernandez |
| Targeted Agent and Profiling Utilization Registry (TAPUR) | Tithi Biswas and Ramya Thota |
| Thoracic Oncology Outcomes Database at Ohio State University | Carolyn Presley |
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| Stakeholder Organization | Representative(s) |
|---|
| American Lung Association | Albert Rizzo |
| Flatiron Health | Nate Nausbaum |
| U.S. Food and Drug Administration | Paul Kluetz |
| Free to Breathe | Mary Henningfield |
| Lung Cancer Alliance | Jennifer King |
| Lung Cancer Foundation of America | Apar Ganti |
| LUNGevity | Andrea Ferris |
| National Cancer Institute | George Chang, Ashley Wilder Smith, and Denise Warzal |
Lumbar Spondylolisthesis
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| Registry | Representative(s) |
|---|
| American Academy of Physical Medicine and Rehabilitation Registry | Kavitha Neerukonda |
| American Academy of Orthopaedic Surgeons, American Association of Orthopaedic Surgeons | Will Shaffer |
| Comparative Study of Anterior vs. Posterior Surgical Treatment for Lumbar Isthmic Spondylolisthesis (I-Spondy) | Paul Arnold |
| InterFuse® S and T for the Treatment of Scoliosis, Spondylolisthesis and Degenerative Disc Disease (DDD) | William Lavelle |
| Medtronic, Inc. | Jason Kemner |
| Michigan Spine Surgery Improvement Collaborative | David Nerenz |
| MIS ReFRESH: Robotic vs. Freehand Minimally Invasive Spinal Surgeries | Doron Dinstein |
| NASS Spine Registry | Pam Hayden |
| Nuvasive Spinetrack Registry | Kyle Malone |
| Quality Outcomes Database (QOD) | Mo Bydon |
| Spine Institute for Quality Conservative Spine Care (QCDR) | Christine Goertz |
| Vanderbilt University | Kristin Archer |
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| Stakeholder Organization | Representative(s) |
|---|
| Aetna | J. Dawn Waters |
| Arthritis Foundation | Guy Eakin |
| Centers for Medicare & Medicaid Services | Jyme Schafer |
| Electronic Health Record Association | Ida Mantashi |
| U.S. Food and Drug Administration | Wen-Hung Chen and Hong Cheng |
| National Institutes of Health | Chuck Washabaugh |
| National Institute on Drug Abuse | Kristen Huntley |
| National Library of Medicine | Lisa Lang |
| National Osteoporosis Foundation | Catrell Harris |
| National Quality Forum | Jeff Dunkel |
| Scoliosis Research Society | Frank Schwab |
| Spinal Research Foundation | Christopher Gorini and Sabrina Woodlief |
