How patients and families can help advance the research
You can get involved in the next scientific trial on the gene mutation discovered to be linked to bladder exstrophy. A larger sample size of people with bladder exstrophy is needed to help facilitate advancements in the research.
Families can get involved by giving a blood sample (2-5 ml EDTA blood). The blood sample is mandatory for the affected person in the family and optional for the parents of this person.
Furthermore, families who participate have to give their informed consent (please find attached) and they should include a copy of the last letter from their doctor describing the form of exstrophy the affected person was born with.
In the United States
Participants in the United States can have their blood drawn from their primary care physicians. Please collect above information together with the blood samples to our collaborators at the Boston Children’s Hospital.
Amelie van der Ven
c/o Prof. Friedhelm Hildebrandt, M.D.
Howard Hughes Medical Institute
Boston Children’s Hospital
Division of Nephrology
300 Longwood Avenue
HU319, Boston, MA 02115, USA
Phone: +1 617-355-6129
Outside the United States
If you participate from outside the US, please send all information and blood samples to Heiko Reutter, M.D.
Institute of Human Genetics
University Hospital Bonn
Sigmund-Freud Str. 25
D-53127 Bonn, Germany
Tel.: +49 (0) 1515 8233 103