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(AMA-0692) Bleeding symptoms in individuals with bleeding disorders

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Assessment of bleeding symptoms in individuals with bleeding disorders using a comprehensive Bleeding History Phenotyping System

Principal Investigator:
Barry Coller M.D.


Contact Information:
Barry Coller, MD
The Rockefeller University
1230 York Avenue
New York, NY 10065
Telephone: 212.327.7490
Enrollment Status:
Practitioner referral, special

Brief Summary of Protocol:
The reason for doing this research is that it can be difficult to predict an individual's risk of bleeding. We are trying to develop new ways to help doctors identify individuals who may bleed too much and to find better ways for researchers to identify the genetic and other factors that affect a person's risk of bleeding too much.

Detailed Description of Protocol:
Your participation will consist of answering questions about your medical history. You will be asked about your general health and if you have certain medical problems. Then you will be asked detailed questions about your medical history as it relates to bleeding. We will ask the questions using two different questionnaires so that we can compare how well each of the questionnaires assesses bleeding symptoms. Your participation will probably take about two hours.
We will also review your medical record in order to review your doctor’s notes and the results of laboratory tests relating to the diagnosis of bleeding disorders. We will also enter the data from your medical record into a computer program that processes the answers automatically. We will compare the information from the computer processing with the results of your questionnaire. The computer will only process information that is related to bleeding disorders, and the results will only be seen by the researchers involved in this study. The results will help us to determine whether a computer program can obtain the same information from the medical record that we obtain using the questionnaires. If the computer program is successful, it might make it possible for doctors and researchers to collect information more efficiently than we can with questionnaires.

What specifically makes a person eligible for the study?
You may be eligible to enter this study:

- Have been previously diagnosed by a hematologist as having a mild bleeding disorder
- Must be able to read and interpret English at or above a sixth grade literacy level



Children permitted to participate:

Potential Benefits.....
There will be no direct benefits to you, but the information obtained may lead to better diagnosis and treatment of bleeding diseases.

Compensation is provided.