Our Mission

We are John & Oksana Rogers. Our mission in life is to help parents of children, and anyone who takes part in research. We know it is a tall task to conquer, but with the help of some very important people, and the media, maybe we can help make a difference. Our Children and the Elderly are the most vulnerable participants in studies. There are millions of more dollars dedicated to the recruitment of children into research than with anyone else. We want parents to know that they do have choices in their child's treatment. We hope you will take the time to look over Daniella's site and educate yourself.

Regulations and Governing Documents from the FDA, and the OHRP:

• * 21 CFR Part 56 - Institutional Review Boards
• * 21 CFR Part 50 : Protection of Human Subjects
• * Title 45: Protection of Human Subjects

Other treatments which have been proven to be effective in the treatment of Cancer.

• Burzynski Clinic - Stanislaw R. Burzynski, M.D., Ph.D.,

Information online from Human Rights Organizations:

• News Stories on Human Research Protection and
  Commentary by Vera Hassner Sharav 
• Cancer Trials: 60% to 70% of subjects are children - Wall Street Journal  (New report in the Wall Street Journal) 

Information online for parents and Patients regarding Veno occlusive disease in Cancer Research :

• Vascular Disorders of the Liver - Veno occlusive disease.
• Side effects from chemotherapy

Information online for Medical Professionals in the treatment of Veno occlusive disease:

• Hepatic Veno occlusive disease.
• Veno occlusive disease in the Hematology Oncology Patient.
• Caring for the critically ill patient. High dose antithrombin III
• Antithrombin III in patients with severe sepsis
• Simultaneous administration of antithrombin III
• Antithrombin treatment of severe hepatic veno occlusive disease in children with cancer.
• Antithrombin III Deficiency

Some suggested steps that you can take to better protect yourself.

1. Asked who wrote the study protocol and what qualified that person to do so.
2. Call the IRB  to learn how much time was spent reviewing the study protocol  and what specific areas, if any, gave members cause for discussion or concern.
3. Find out if there has or has been professional debate about the risks associated with the study drug.  It’s so, ask for referrals to medical publications were these risks are discussed
4. Request that the study staff speak with you in plain English or whatever language you can understand, or find someone who can.
5. Quiz the researcher and study coordinator about how many adverse events and deaths have been reported during trials of this study drug, whether or not they were actually attributed to the drug.  If they don’t know call the IRB.  If the IRB doesn’t know then call the pharmaceutical company.
6. Ask the researchers if they would advise you to enroll in the trial if you were a member of their family.
7. Gather as much information as you can from reports in news coverage about your study medication.
8. If possible go to another research center conducting the same clinical trial and go through the same set of questions and see if you get the same answers.  Seek explanations for inconsistencies, and obtain a Informed Consent with the trial information.
9. Share everything you’ve learned with your family doctor and other friends and family within your support network before enrolling.

• Here is a must read book for anyone who is about to enter the world of Clinical Trials. Keep yourself informed. Click here to order.

  Informed Consent