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Batten disease

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Specialized doctors worldwide

Who leads the research into Batten disease? Everyone here comes from a public registry: as principal investigator of a study on ClinicalTrials.gov, or as last author of publications in PubMed. Those are two different things, so we put them in two lists side by side instead of merging them into one figure.

Where these doctors work
Click or point to a dot to see who works there. 15 of the 27 physicians are on the map — we only place those who work at an institute whose city we know, and don't guess the rest.

This is not a referral and not a judgment on care. We know nothing about how these people treat, whether they accept patients, or how to reach them. We do not display contact details. If you want a second opinion or a referral, go through your own specialist.

Leads the most studies

Registered as principal investigator at ClinicalTrials.gov. Setting up and running a study is years of work.

  1. 1 Ronald G. Crystal Weill Medical College of Cornell University, United States leads 6 studies register →
  2. 2 Emily de los Reyes Abigail Wexner Research Institute, Nationwide Children's Hospital, United States leads 4 studies register →
  3. 3 An N. Dang Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), United States leads 3 studies register →
  4. 4 Angela Schulz Head of NCL-Specialty Clinic, Germany leads 1 study · 4 publications as last author register →
  5. 5 Anil B Mukherjee Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), United States leads 1 study register →
  6. 6 Benjamin Greenberg University of Texas Southwestern Medical Center, United States leads 1 study register →
  7. 7 David Hiltzik Northwell Health, United States leads 1 study register →
  8. 8 David Rogers Nationwide Children's Hospital, United States leads 1 study register →
  9. 9 Erika F Augustine University of Rochester, United States leads 1 study register →
  10. 10 Filippo M Santorelli IRCCS Fondazione Stella Maris, Italy leads 1 study register →

Also leading

  1. 11 Forbes D Porter Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), United States leads 1 study register →
  2. 12 Gary D. Clark Texas Children Hospital, United States leads 1 study register →
  3. 13 Jessica Scherr Nationwide Children's Hospital, United States leads 1 study register →
  4. 14 Joanne Kurtzberg Duke University, United States leads 1 study register →
  5. 15 Jonathan W Mink University of Rochester, United States leads 1 study register →
  6. 16 Laura Andres-Martin New York Stem Cell Foundation Research Institute, United States leads 1 study register →
  7. 17 Laura M Koehly National Human Genome Research Institute (NHGRI) leads 1 study register →
  8. 18 Laurent Servais Centre Hospitalier Universitaire de Liege, Belgium leads 1 study register →
  9. 19 Lenora M Lehwald Nationwide Children's Hospital, United States leads 1 study register →
  10. 20 Mitchell S Cairo New York Medical College, United States leads 1 study register →
  11. 21 Nathan Selden Oregon Health and Science University, United States leads 1 study register →
  12. 22 Paul Orchard Masonic Cancer Center, University of Minnesota, United States leads 1 study register →
  13. 23 Robert Steiner Oregon Health and Science University, United States leads 1 study register →
  14. 24 Todd Durham Senior Vice President, Clinical and Outcomes Research, United States leads 1 study register →

Publishes most about this disease

Counted as last author on publications from the last five years — in medicine the leader of the research group. This also includes physicians who do not register studies but do advance the field.

  1. 1 Jonathan D Cooper School of Medicine, United States 9 publications as last author PubMed →
  2. 2 Angela Schulz Head of NCL-Specialty Clinic, Germany leads 1 study · 4 publications as last author register →
  3. 3 Robert J Huber Trent University, Canada 4 publications as last author PubMed →
  4. 4 Paul C Trippier College of Pharmacy, United States 3 publications as last author PubMed →

Counted from ClinicalTrials.gov and PubMed, updated on 2026-08-10. Is something incorrect, or would you prefer not to be listed? Let us know — we'll adjust it.

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