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.

It Starts With Me

Clinical Trials: What you need to know , published by the CIHR Canadian HIV Trials Network in partnership with the Canadian AIDS Society.

Health Canada’s Clinical Trials Database
FAQ page  about Health Canada’s Clinical Trials Database
Access the Clinical Trials Database

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.

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August 2019

Bone health in symptomatic carriers of hemophilia A
(This study is only be available in English and there is no deadline to participate)

St. Michael’s Hospital (Toronto), Kingston General Hospital (Kingston), and Foothills Medical Centre (Calgary) are conducting a study on bone density in women who are carriers of hemophilia A around the time of menopause compared to women of the same age who are not carriers. The information learned from this study will be important as recent studies have shown that female symptomatic carriers can bleed into joints. This may place them at greater risk of low bone density and osteoporosis.

This study will involve one study visit.

You are eligible for this study if:
1. You are 50 years old or older.
2. You are a symptomatic hemophilia A carrier, defined as a self-administered bleeding assessment tool (Self-BAT*) score ≥ 6.
     *The Self-BAT is a scoring tool that can be taken online through the Lets Talk Period website letstalkperiod.ca/self-bat
3. You have a confirmed diagnosis of carriership through genetic testing OR you have a family history of hemophilia (e.g. your dad has hemophilia A or you are a mother of two sons with hemophilia A or you have one son with hemophilia A and at least one other affected male relative). All affected males must have a confirmed diagnosis through genetic screening.

You are not eligible if:
1. You are pregnant or breastfeeding.
2. You are diagnosed with another bleeding disorder (e.g. von Willebrand disease).
3. You are diagnosed with hepatitis C or Human Immunodeficiency Virus (HIV) since both are separately associated with low bone density.
4. You have a history of: kidney failure, Cushing’s disease, liver impairment, anorexia and/or bulimia, rheumatoid arthritis since these are separately associated with low bone density.
5. You are currently taking bisphosphonate therapy (alendronate), chronic steroid use (prednisone), or other anti-resorptive therapy.

The study visit would include:
a) Review of the consent form and confirmation of eligibility criteria.
b) A DEXA scan – a special type of X-ray that measures bone mineral density. It is non-invasive and painless. It takes about 15 minutes and involves you lying on a table, and having a small X-ray scan your lower back and both hips.
c) A blood test.
d) A questionnaire regarding your physical activity levels. This will take approximately 5 to 15 minutes to complete.

In appreciation of your time, you will receive $100 remuneration to cover any travel, mileage and parking expenses or meals.

We hope you will be interested in participating in this study. We want to better understand how this genetic condition affects hemophilia carriers’ bodies.

If you are interested in participating, please e-mail Grace Tang at TangGr@smh.ca.

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July 2019

Pain management in hemophilia

The Pain Management in Hemophilia (PMiH) Working Group, a partnership between the Chronic Pain Network and the Association of Hemophilia Clinic Directors of Canada, is conducting a survey amongst people 18 years and older living with hemophilia to examine the scope of their experiences with pain, pain interventions and hemophilia clinics.

The survey consists of 33 questions and should take approximately 20 minutes to complete. Participation is voluntary and results will be used to improve training and treatment of pain in hemophilia.

PMiH is the first pan-Canadian multidisciplinary task force of patient partners, hematologists, pain experts, nurses, physiotherapists, social workers and other health care professionals and researchers.

Please access the survey using the link below:

www.surveymonkey.com/r/S5BM9JF

Should you have any questions, please contact cpn@mcmaster.ca.

Thank you very much for your time and consideration.

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