Mail:
1600 Rockland Road
Wilmington, DE 19803
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Phone:
(302) 651-5916
Osteogenesis Imperfecta
- Bober, Michael, MD
- Duker, Angie MS, CGC
As one of the foremost centers in the world for the treatment of children with dwarfism, the Skeletal Dysplasia Program at the Nemours/Alfred I. duPont Hospital for Children in Wilmington, Delaware, offers comprehensive, integrated medical and surgical care.
Your child’s initial visit to the Skeletal Dysplasia clinic usually begins with diagnostic visit through our medical genetics division. These visits can take 1-2 hours to complete and are often coordinated with the Orthopedics Division. Because arranging travel and multiple appointments can be difficult for families, we try to structure our program to enable you to bring your child to see our physicians and any other specialists on a single day.
For more information about skeletal dysplasias, please visit Orthopedics Services.
Learn more about all of the services offered at Alfred I. duPont Hospital for Children.
The Potentials Foundation is sponsoring 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. The name of the registry is “The Potentials Foundation Primordial Registry at Nemours/Alfred I. duPont Hospital for Children”. Dr. Michael Bober at the hospital is the physician in charge of this registry. 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.
The following other specialists are also involved:
- William Mackenzie, MD
Orthopedics
Nemours/Alfred I. duPont Hospital for Children - Carol Wise, PhD
Geneticist
Texas Scottish Rite Hospital for Children - Christine Flora, MS
Geneticist
St. Joseph’s Regional Medical Center, NJ - Elizabeth Hale
President
Potentials Foundation - Kenneth Rogers, PhD, ATC
Orthopedics
Nemours/Alfred I. duPont Hospital for Children
If you would like more information about this registry or would like to discuss if you or someone else is eligible to participate please contact either:
Michael B. Bober, MD, PhD
Nemours/Alfred I. duPont Hospital for Children
1600 Rockland Road
Wilmington, DE 19803
302-651-5916
OR
Christina Flora, MS
St. Joseph's Children's Hospital
Genetics Division
703 Main Street
Paterson, NJ 07503
973-754-2727
If you have 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, you may contact the persons listed below:
For Delaware Studies Only:
Carlos Rose, MD
Chairperson
Nemours - Delaware Institutional Review Board
(302) 651-5970
For all studies:
Paul Garfinkel, MSH
Director
Nemours Office for Human Subjects Protection
(904) 697-4023
Nemours Long Distance Operator: (800) SOS-KIDS (800-767-5437)
Website: http://www.nemours.org/research/compliance.html
Email address: NOHSP@nemours.org
Consent Documentation
Quick Links
Register Your Child for the Potentials Foundation
The Potentials Foundation Primordial Registry at Nemours/Alfred I. duPont Hospital for Children seeks to learn more Microcephalic Osteodysplastic Primordial Dwarfism Type II (MOPDII) and other related forms of primordial dwarfism. Learning more about MOPDII in children can help us determine how to predict and treat medical problems and conditions. This study involves only the collection and storage of data from the medical record. There are no special procedures or visits.
Find out more about The Potential Foundation Registry.