Amniotic Band Syndrome - Amniotic Band Syndrome

The amnioticbandsyndrome.com web site has been approached by the Harvard Medical School and Massachusetts General Hospital to present their clinical research study to our site visitors.

The Harvard Medical School and Massachusetts General Hospital invites interested members of Amniotic Band Syndrome group to participate in a clinical research study of individuals born with limb deficiencies. We want to investigate whether or not there are any risk factors in the pregnancies of children who are born with birth abnormalities of the arms or legs.

We are recruiting children and adults who were born with either

Amniotic Band Limb Deficiency or
Terminal Transverse Limb Deficiency

Qualifications
Briefly, before any corrective surgery, your limb deficiency should have some or all of the following characteristics:

Webbing of the tissues between your fingers and toes
Constriction bands and attached strings of tissue on any part of your limbs
Missing portions or total absence of any of the following:
- Your fingers, hand (beyond the wrist joint) forearm (below the elbow joint) or arm (below the shoulder joint)
- Your toes, foot (beyond the ankle joint); lower leg (below the knee) or leg (below the hip joint)

Study Participation involves

One questionnaire about your medical and family history which can be administered on the phone or in person
Routine medical physical exam that will focus on your affected limb, performed by our clinical geneticist that can be done in your home or on site at our hospital
The total time should not be longer than 2 hours and 30 minutes

Reimbursement for travel costs will be provided.

All information obtained will be kept confidential. Your participation is entirely voluntary and will not affect any aspect of your medical care.

Contact - Please complete the form below
To learn more about this study and possibly participate in it, please contact the study coordinator, Uma Deshumkh, at (617) 724-1252 or via email at udeshmukh@partners.org

For other questions:
The principal investigator of the study is Lewis B. Holmes, M.D., Chief, Genetics Unit, MassGeneral Hospital for Children. He can be contacted at 617-726-1742 or via email at holmes.lewis@mgh.harvard.edu

Terminal Transverse Limb Deficiency and Amniotic Band Limb Deficiency Study:
Risk Factors in Pregnancy --

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participate in Amniotic Band Syndrome Research Study