Research

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 A.I. duPont Hospital for Children”. Dr. Michael Bober at Alfred I. duPont Hospital for Children 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
A.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
A.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
Alfred I. duPont Hospital for Children
1600 Rockland Road
Wilmington, DE 19803
302-651-5916

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/nohsp.html
Email address: NOHSP@nemours.org