This section is intended solely to inform visitors of various research studies and patient recruitment currently underway. Their inclusion is not an endorsement of a particular product, company or study.
CLINICAL TRIALS of medications…phases…the pros and cons…the rights of “subjects”…are trials necessary? You will find below links to websites which provide answers to frequently asked questions about clinical research.
Clinical Trials: What you need to know , published by the CIHR Canadian HIV Trials Network in partnership with the Canadian AIDS Society.
ClinicalTrials.gov is a registry and results database of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial’s purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from health care professionals.
Searching for clinical trials just got easier. ANTIDOTE is a revolutionary search engine for clinical trials, covering all medical conditions from all over the world. ANTIDOTE works closely with patients, doctors and pharmaceutical companies to make clinical research information more clear and accessible.
Survey for people caring for people with moderate or severe hemophilia A
Are you someone who attends to the personal needs of someone with hemophilia who requires support?
A team of researchers from McMaster University (Hamilton, Ontario) is looking for caregivers of people with moderate or severe hemophilia A to complete a survey to help them assess the personal impact of providing care on the caregiver. Caregivers may be parents, spouses, partners, friends or other family members. Examples of caregiving roles may include: helping to administer factor concentrate infusions, keeping track of factor products at home, or organizing appointments and transportation to the bleeding disorder treatment centre (HTC).
If this sounds like you, please click on this link: http://mtrpsurvey.mcmaster.ca/index.php/683763/lang-en to learn more and answer a few questions to determine whether this survey is appropriate for you.
Or you may contact the study coordinator, Shannon Lane, to receive more information about the survey or to have a paper copy of the survey mailed to you.
Phone: 905-525-9140 ext. 21788
Survey participants can choose to enter a draw to win one of three $50 gift cards.
Are you using MyCBDR? Are you going to start using MyCBDR?
Research participants are needed for a study that is assessing the ease-of-use and user experience of the Canadian Bleeding Disorders Registry (CBDR) and MyCBDR from the perspectives of end users. The study is being conducted to identify any shortcomings with the system that can be corrected and to understand how the uptake of these systems can improve disease management.
This study is funded by the Canadian Hemophilia Society/Pfizer Care Until Cure Research Program.
There are TWO different options for participating in this study:
If you have already starting using MyCBDR…
You are invited to participate in a 20-25 minute interview where you will be asked questions about your experiences, opinions and perceptions of the system. The interview can be done by phone, Skype, or web-conference (depending on your preference).
Participants will be given a gift card to Starbucks or Home Depot or Indigo.
If you have NOT yet started using MyCBDR…
You are invited to participate in 2 web conference sessions, the first lasting 1 hour and the second 30-45 minutes. The first will take place just before you start using the system and the second 3 months later. During the first session, 3 methods will be used to collect data from you: a “think aloud” where you work through a series of tasks in the MyCBDR training site while thinking out loud, an interview, and a 10-item questionnaire. The second session will only include the interview and questionnaire.
After each web-conference participants will be given a gift card to Starbucks or Home Depot or Indigo
To participate, or for more information, please contact study coordinator Shannon Lane.
Phone: (905) 525-9140 ext. 21788
Efforts will be made to publish study findings in a peer reviewed journal and findings will also be shared in an article in Hemophilia Today.
This study has been reviewed by the Hamilton Integrated Research Ethics Board HiREB 1929.
Safety, Acceptance, Fairness, and Equality (SAFE Project): Acceptable Risk and Donor Selection
This study, conducted by researchers at McGill University and the University of Nottingham (funded by the Canadian Blood Services), seeks to better understand people’s attitudes related to blood donation and the current limits on accepting blood from men-who-have-sex-with-men (MSM). In recent years, the policy on accepting blood from MSM has been relaxed somewhat and further changes are contemplated. This fairly brief survey should take only 15 minutes to complete. Although not all questions may seem related to the topic of blood donation, it is hoped that it will give researchers and policy-makers a better idea of a number of things that influence attitudes.
The survey is anonymous. No information that might identify you will be requested. At the end, after the survey has been completed, you will be directed to another part of the website where you can enter your name and e-mail address if you would like to be entered into a lottery with the possibility of winning one of four iPad minis. This is done simply as appreciation of your time and it will not be possible to link your survey responses to this information. If you prefer, you do not have to enter the lottery to complete the survey.
If you have any concerns you may discuss them with the principal investigator, Dr. Blaine Ditto, of the Department of Psychology of McGill University at 514-398-6097 or firstname.lastname@example.org. You may also contact McGill University’s Research Ethics Officer, Ms. Lynda McNeil at 514-398-6831 or email@example.com.
Positive Plus One
The Canadian Hemophilia Society is supporting researchers across the country on Positive Plus One: A national, mixed-methods study of relationships where one partner has HIV, and the other does not. Positive Plus One is currently recruiting participants, and wants to hear the voices of both HIV-positive and HIV-negative partners. Participants can share the ups and downs of living with HIV in their relationship. Their experiences may also help other couples, and may lead to better health and support programs for all.
If you would like to participate in the study, please go to www.PositivePlusOne.ca or call 1-888-740-1166.