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Skeletal Dysplasia

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Research

Microcephalic Primordial Dwarfism Registry

We are currently coordinating a registry of individuals with Microcephalic Osteodysplastic Primordial Dwarfism Type II (MOPDII) and other related forms of primordial dwarfism. The purpose of this registry is to learn more about MOPDII and how to predict and treat medical problems and conditions that arise as a result.

Name of Registry

“Primordial Registry at A.I. duPont Hospital for Children”

Leading the Study

Dr. Michael Bober, Nemours/Alfred I. duPont Hospital for Children

About the Study

This study involves only the collection and storage of data extracted from the medical record. There are no special procedures, visits, or expectations of you as a result of participation in this registry. You will not be asked to have any specific testing for the sole purposes of research. We are asking for your permission to review your existing medical records.

 
Study Specialists
  • Angie Duker, MS

    Genetic Counselor
    Nemours/Alfred I. duPont Hospital for Children

  • William Mackenzie, MD

    Orthopedics
    Nemours/Alfred I. duPont Hospital for Children

  • Carol Wise, PhD

    Geneticist
    Texas Scottish Rite Hospital for Children

  • Christina Flora, MS

    Genetic Counselor
    St. Joseph’s Regional Medical Center, NJ

  • Kenneth Rogers, PhD, ATC

    Orthopedics
    Nemours/Alfred I. duPont Hospital for Children

 
Consent Documentation

Contact Us

For more information about this registry or eligibility to participate:

Michael B. Bober, MD, PhD

(302) 651-5916

Angie Duker, MS, CGC

(302) 651-4181

Medical Genetics

Nemours/Alfred I. duPont Hospital
for Children
1600 Rockland Road
Wilmington, DE 19803

For questions about your child’s rights as a research subject, what to do if your child is injured, if you would like to offer input or obtain information, or if you cannot reach the investigator, or want to talk to someone else who is not involved with this research:

For Delaware Studies Only
Carlos Rose, MD

Chairperson, Nemours - Delaware Institutional Review Board
(302) 651-5970

For All Studies
Nemours Office for Human
Subjects Protection

(904) 697-4022
Learn More About NOHSP »

Paul Garfinkel, MSH

Director
(904) 697-4023
NOHSP@nemours.org

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