GLOBAL Hosts National Experts in Denver to Finalize Recommendations for the Second Edition of the GLOBAL Medical Care Guidelines for Adults with Down Syndrome

December 4–7, Denver, CO — For four days, Denver became the center of a milestone moment in adult Down syndrome medical care. Sixteen leading medical experts representing the foremost adult Down syndrome clinics across the United States gathered at GLOBAL’s Headquarters to finalize the recommendation statements for the highly anticipated Second Edition of the GLOBAL Medical Care Guidelines for Adults with Down Syndrome.

This intensive, collaborative meeting was a resounding success and marks a major step forward in improving health outcomes and quality of care for adults with Down syndrome nationwide.

 

Building on a Historic First Edition

The First Edition of the GLOBAL Adult Guideline, published in JAMA in 2020, remains the first and only evidence-based practice guideline designed specifically for primary care providers who support adults with Down syndrome. Its publication represented a watershed moment in the field—and the second edition promises to go even further.

What’s New in the Second Edition

The forthcoming edition will feature significant updates and expansions, reflecting both the latest research and the needs expressed by clinicians, families, and self-advocates, Including:

  • Updated recommendations across the original nine topic areas, reflecting new evidence and clinical insights.
  • Four entirely new topic areas:
    • Blood Cancer
    • Solid Tumor Cancers
    • Sleep Apnea
    • Eye & Vision
  • A substantially expanded Musculoskeletal section, addressing mobility, strength, pain, and orthopedics in greater depth.
  • A new “Future Research Needs” section, offering a blueprint for clinicians and researchers to guide future studies.
  • An expanded workgroup, featuring many returning members, eight new authors, and 15 new volunteers, including clinicians, researchers, and specialists across multiple disciplines.
  • This strengthened and broadened authorship reflects the growing momentum in the field and the ongoing commitment to increasing equity and excellence in care for adults with Down syndrome.

A Community Celebration: Reception at the Sie FilmCenter

In addition to the work sessions, the visit included a special evening reception at the Sie FilmCenter. Guideline authors gathered with GLOBAL affiliate members, self-advocates, and their families to celebrate progress and community partnerships.

The evening featured an exclusive screening of the JJ Herz digital short R&R starring Kevin Iannuci, the recipient of the 2025 GLOBAL Quincy Jones Exceptional Advocacy Award.

 

The Halfway Point in a Landmark Update Process

The Recommendation Finalization Meeting represents the halfway mark of the guideline update process. Guideline best practices require review and updates every five years, and GLOBAL is proud to be right on schedule.

With recommendations now finalized, the next phase begins:
Authors will work on writing the full narrative of the Second Edition, with the goal of preparing a manuscript for submission before the end of 2026.

 

Meet the GLOBAL Medical Care Guideline Authors

  1. Dr. Peter Bulova — Professor of Medicine; Medical Director, University of Pittsburgh Adult Down Syndrome Center
  2. Dr. George Capone — Associate Professor of Pediatrics, Johns Hopkins; Director, Down Syndrome Clinic and Research Center, Kennedy Krieger Institute
  3. Dr. Brian Chicoine — Co-Founder and Medical Director, Advocate Medical Group Adult Down Syndrome Center
  4. Dr. Joaquin Espinosa — Executive Director, Linda Crnic Institute for Down Syndrome
  5. Dr. Terry Harville — Professor of Internal Medicine, Hematology/Oncology; Medical Director, HLA & Histocompatibility Laboratory; Medical Director, Immunogenetics & Transplantation Laboratory
  6. Dr. Vishal Jhanji — Professor of Ophthalmology, University of Pittsburgh School of Medicine
  7. Dr. Christine Heubi — Surgical Director, Complex Obstructive Sleep Apnea Center; Assistant Professor, UC Department of Otolaryngology – Head & Neck Surgery
  8. Dr. Barry Martin — Associate Professor of General Internal Medicine, University of Colorado School of Medicine; Medical Director, Adult Down Syndrome Clinic at Denver Health
  9. Dr. Emily McCourt — Chief & Vice Chair of Pediatric Ophthalmology; The Ponzio Family Chair for Pediatric Ophthalmology
  10. Dr. Lina Patel — Associate Professor of Psychiatry; Director, Down Syndrome Behavioral Health Collaborative
  11. Dr. Moya Peterson — Clinical Professor, University of Kansas Medical Center School of Nursing; Medical Director, Adults with Down Syndrome Specialty Clinic
  12. Dr. Michael Rafii — Professor of Clinical Neurology; Medical Director, Alzheimer’s Therapeutic Research Institute
  13. Dr. Michael Puente — Assistant Professor of Ophthalmology, University of Colorado Anschutz Medical Campus; Director of Medical Student Education
  14. Dr. Carl Tyler — Professor of Family and Community Medicine; Cleveland Clinic Lerner College of Medicine
  15. Dr. Anna Marie White — Clinical Assistant Professor of Medicine & Pediatrics; Medical Provider, University of Pittsburgh Adult Down Syndrome Center
  16. Dr. Thessa Hilgenkamp — Assistant Professor, Department of Physical Therapy, University of Nevada

A Major Step Toward Better Health Outcomes

GLOBAL is honored to convene this extraordinary group of experts, united in their commitment to improving and extending the lives of adults with Down syndrome.

As the Second Edition of the GLOBAL Medical Care Guidelines moves into its next phase, we look forward to sharing more updates—and ultimately delivering a stronger, more comprehensive resource to clinicians, families, and self-advocates around the world.

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