Clinical protocols
for rare disease patient care
RareCAP is a growing online repository of clinical protocols for the care of rare disease patients in a wide range of settings
Our Team

RareCAP is a collaborative effort between Children’s National Rare Disease Institute and Vanderbilt Institute for Clinical and Translational Research, with support from Takeda, to establish a digital platform to reduce barriers for clinicians, patients, and researchers in determining the appropriate diagnosis and clinical care for patients with rare disease.

RareCAP Platform Team
Colleen Lawrence, PhD
Senior Platform Manager
Dr. Lawrence is an Assistant Director at the Vanderbilt Institute for Clinical and Translational Research (VICTR). She has PhD in Biochemistry, Molecular, and Cell Biology from Cornell University with over 13 years of experience in project management and research administration. She specializes in creating tools to support the clinical research enterprise including building a REDCap-based model for electronic consent of research participants.
Jennifer Micham, PhD, RN
Rare Disease Clinical Protocol Curator
Dr. Micham is Curator of rare disease clinical protocols for RareCAP at the Vanderbilt Institute for Clinical and Translational Research (VICTR). Her background is deeply rooted in clinical practice with a nursing career spanning over three decades. Her PhD in Educational Psychology has cultivated a deeper understanding on bridging the gap between research and patient care, ensuring that the latest evidence informs decision making at the bedside.
Medical Advisory Board
Debra Regier, MD
Dr. Regier is chief of Genetics and Metabolism at Children's National Hospital. Dr. Regier’s current work in educational outcomes research has led to federal, industry and philanthropic support and she has received multiple awards for her impact on rare disease education and educational outcomes research.
Deepika Burkardt, DO
Board Member
Dr. Deepika D. Burkardt is a board certified Clinical and Biochemical Geneticist/Genomicist. She currently serves as a Medical Geneticist in Department of Genetics and Metabolism at the Rare Disease Institute at Children’s National. Dr. Burkardt has a special interest in the care of medically complex patients with differences in growth and Skeletal development/bone health. She serves as Vice President for the DC-area alumni chapter of Tau Beta Pi, the national engineering honors society.
Gregory Enns, MD
Board Member
Dr. Enns is a Professor of Pediatrics in the Division of Medical Genetics at Stanford University School of Medicine. He primarily practices at the Lucile Packard Children’s Hospital with a focus on clinical and biochemical genetics. His research is focused on the diagnosis and treatment of rare genetic disorders, especially mitochondrial disorders, organic acidemias, urea cycle disorders, congenital disorders of glycosylation and lysosomal disorders.
Christopher Jordan, MD
Board Member
Dr. Jordan is the Outpatient Medical Director for Pediatric Cardiology at Inova L.J. Murphy Children’s Hospital in Fairfax County, Virginia. He is a genetic cardiologist and is fellowship-trained in Pediatric Cardiology and Medical Genetics and Genomics. He has a clinical practice that includes pediatric and fetal cardiology with a focus on genetic aortopathies such as Heritable Thoracic Aortic Disease (HTAD), Marfan Syndrome, and Loeys-Dietz Syndrome. Dr. Jordan also sees children and families affected by other cardiovascular conditions with an underlying or suspected genetic cause.
Nadia Merchant, MD
Board Member
Dr Merchant is a pediatric endocrinologist and geneticist at Children’s National Hospital with focus on intersection of genetics and endocrinology with specific interest is in bone disorders, ranging from growth to bone health. She is involved in clinical research for rare diseases, skeletal dysplasias and Duchenne muscular dystrophy. She is passionate about maximizing a patient’s potential along with improving long term health outcomes.
Marshall Summar, MD
Board Member
Dr. Summar has almost 40 years of experience in the clinical field of rare diseases. He has worked in the academic field building the first national Rare Disease Institute at Children’s National and leading a number of clinical consensus efforts. In the area of patient advocacy, he served as the National Organization for Rare Disorders board chairman from many years and worked to develop the IAMRARE natural history program and the NORD Rare Disease Clinical Centers of Excellence program. He has also served as the President of the Society for Inherited Metabolic Disorders and on the NIH NCATS Advisory Council.
V. Reid Sutton, MD
Board Member
Dr. Sutton is a tenured professor of molecular and human genetics at Baylor College of Medicine. Clinical and research interests include inborn errors of metabolism, skeletal dysplasias, and gene discovery and syndrome identification. He has authored over 180 peer-reviewed publications as well as dozens of book chapters and invited articles. He works closely with patient advocacy organizations, including serving on the board of directors for the Osteogenesis Imperfecta Foundation as well as medical advisor for Robinow syndrome and White-Sutton syndrome foundations.
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RareCAP was developed by VUMC in collaboration with Children’s National Hospital.
Supported by a grant from Takeda.
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