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It is critical that we continue to collect information on PPB. We ask all families and physicians who use our information to allow us to collect data on every child with PPB. We ask for your help. Every time we receive an inquiry, we will ask to follow the patient.
Families and physicians may initiate the enrollment process. Forms may be downloaded as listed below.
Review Board / Human Subjects Committee Approvals
The International PPB Registry is approved on a continuing basis by the IRB of Children’s Hospitals and Clinics of Minnesota.
Most institutions allow patients/families to enroll directly with the Registry using the consent/HIPAA and release forms provided here. Direct family enrollment often avoids the need for each institution’s IRB/HSC to review the Registry. (For a rare disease, it is often impractical and thus impossible to obtain individual IRB processing.) On the other hand, when necessary, the Registry will work eagerly with IRBs to satisfy requirements.
Genetic Study in PPB: A New Scientific Study of PPB Causes
The International PPB Registry is conducting a major new study of genetic inheritance in PPB patients and their families. We ask that all PPB patients and their families consider participating. A detailed family medical history and a small blood sample are required. Please contact the Registry by phone at 612-813-7115 or by e-mail at gretchen.williams@childrensmn.org for more information.
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