Research - Long-Term Outcome of Women with HELLP Syndrome
"At present, we are working with Drs. Baha Sibai and Helen How at the University of Cincinnati on a project, entitled " The long term outcome of women with HELLP syndrome". If you would like to assist them in their data collection, please go to our website
"www.hellpsyndrome.org" for contact information. You are requested to send your medical record at the time of your HELLP diagnosis and answered questionnaire to Dr. Helen How. This is very important, since there is at present no data on this issue. In order to make any accurate correlation, it is necessary to have information from hundreds of women with HELLP syndrome."
 
If you have developed health concerns since having HELLP such as diabetes mellitus, chronic hypertension, cardiac disease, renal or respiratory problems, depression, anxiety, or autoimmune disorders, you are a candidate for this research.  Dr. How would like to gather the following information from you:
· Medical records from all pregnancies
· Medical records from health issues after having had HELLP. 
· HELLP-Long Term Outcome Questionnaire (a new form developed by Dr. How)
· HELLP Syndrome Society Survey - please mail this to the HELLP Syndrome Society and we will copy and forward this to Dr. How. 
All information can be sent to Dr. How except for our HELLP Syndrome Survey.  We would like to have that sent to us so that we can continue to collect information for our own survey results.  The addresses are below:
Medical Records and Dr. How's form
 - pregnancy and health issues after having HELLP
Dr. Helen How
University of Cincinnati
Department of OB-GYN
Medical Science Building, room 5463
231 Albert Sabin Way
Cincinnati, Ohio 45267-0526
 HELLP Syndrome Society Survey

Send to:
HELLP Syndrome Society
PO Box 44
Bethany, WV  26032  USA

Below is information from Dr. How that may answer some of your questions about this research and your privacy.  If you have any further questions please email the HELLP Syndrome Society at HELLP1995@aol.com.
 
Long-Term Outcome of Women with HELLP Syndrome Research

Under federal law, researchers are required to get written permission to look at a prospective participant's health information for research study. Because you have shown an interest in our research project (please refer to study protocol), and are willing to send us your health information (medical record) voluntarily, you are not required to sign any release form to participate in our research project.
 
How Do We Protect Your Privacy?
It is our privacy policy that any personal and medical information you provide will remain confidential. Dr. Helen How, the principal investigator, and Drs. Baha Sibai
and Caroline Stella, Co-investigators, will use the information obtained from your medical records for this research project.
What Will We Be Looking At and Why?
We will be looking at the following information to see if your HELLP diagnosis was accurate and how frequent it occurs in your subsequent pregnancies (if applicable) as well as how it affects your future health. Therefore, any new major medical diagnosis after your pregnancy with HELLP syndrome should be reported to us by sending us
your medical records. This will help us answer questions, which no one knows at this time.
Is My Permission Voluntary?
You are not required to sign any release form. Sending your medical records to us means that you are giving us permission to examine your record. You can personally send us your medical records or request the Doctor's office or medical record's staffs to send your record directly to us. The Doctor's office and Medical record's staffs usually do not charge you a fee if it is sent directly to another physician. You need to sign a release form to give permission for the Doctor's office or medical record's staffs to send us your medical records. Dr. Helen How's address is as follows:
University of Cincinnati
Department of OB-GYN
Medical Science Building, room 5463
231 Albert Sabin Way
Cincinnati, Ohio 45267-0526

We thank you for your participation in the research project.
 
Jennifer and Steve Bohach
HELLP Syndrome Society

"...This is very important, since there is at present no data on this issue…"