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.

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November 2020

Have you given birth to a child in the past five years who you knew had or suspected could have hemophilia A or B?

Researchers from McMaster University are seeking parents to participate in a one-hour interview for a research study to explore and understand parents’ experiences and involvement in medical decision making throughout their pregnancy and delivery of their child known or suspected to be affected by moderate or severe hemophilia A or B.

Interviews will be conducted in English and can take place either by phone, Skype or in-person, depending on where you live.

Some of the decision areas that will be explored may have involved both parents or another support person (such as a friend or family member). If a partner (or another person in the parent’s life) also had a role in helping make decisions throughout the pregnancy and delivery, it is encouraged to invite this individual to participate in the interview with the participant. Interviews can also be conducted separately.

Participants will receive one $30.00 gift card to their choice of: Home Depot, Starbucks or Indigo.

For more information, please contact Shannon Lane at 905-525-9140 ext. 21788 or at: lanesj@mcmaster.ca.

This research study is being led by Principal Investigator, Dr. Anthony Chan and is conducted with support from C17 and funded by Childhood Cancer Canada Foundation.

 

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September 2020

The impact of gene therapy for hemophilia on mental health outlook

The Center for Medical Technology Policy* is working with patient organizations to conduct a study about how a person’s mental health outlook might be impacted by receiving gene therapy for hemophilia. Having a better understanding about the mental health of people with hemophilia will help determine the positive and negative impacts of gene therapy.

The Center for Medical Technology Policy is recruiting men and adolescents (age 15 or older) with moderate or severe hemophilia A or hemophilia B. Participants will be paid $100 USD or equivalent for a 90-minute online interview.

If you are interested, please click on the following link for more information: coreHEM Mental Health Screening Questionnaire. Principal Investigator: Elizabeth Clearfield, MHS

* The Center for Medical Technology Policy (CMTP) is an independent non-profit dedicated to developing a health care system where patients, clinicians, health care policymakers, and payers have the evidence they need to make informed health decisions. Its offices are located in Baltimore, Maryland.

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August 2020

Patient perspectives and economic consequences of frequent tenders for clotting factors

A team of Canadian hemophilia researchers are doing this study to learn more about the views, experiences, and economic impact related to frequent tender changes, among Canadian patients with hemophilia, or parents/ caregivers of someone with hemophilia.

We do not know the impact of mandated product changes on Canadian patients and families, such as worries about the safety and effectiveness of the new product, extra clinic visits and bloodwork, extra costs from visits, and emotional distress from frequent treatment changes.

The survey is anonymous. It will take around 15-20 minutes of your time to complete.

Please access the survey using the links below:

Canadian Blood Services (CBS) : if you or your child are affected by the CBS tender changes in Canadian provinces/territories outside of Quebec (English version) :

www.surveymonkey.com/r/GM8SHMM

Hema-Quebec : if you or your child were affected by the Héma-Québec tender changes (English version) :

www.surveymonkey.com/r/BVVRKBR

Should you have any questions, please contact: linda.sun@ualberta.ca

Thank you very much for your time and consideration.


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June 2020

What is important for good patient-physiotherapist relationships?

A team of researchers from the University of Alberta are doing a research project to better understand patient-physiotherapist relationships in the care of people with bleeding disorders and other chronic conditions affecting joints and muscles.

They are inviting people who have had 3 or more appointments with the same physiotherapist to complete a one-time survey. The study is open to anyone with an inherited bleeding disorder, who is 16 years of age or older.

The survey is anonymous, your physiotherapist and any members of the treatment centre team will not have access to your responses. It will take around 15-20 minutes to complete.

If you would like to learn more and/or complete the survey, please click on the survey link below:

https://ca.surveygizmo.com/s3/50019437/Physiotherapy-Therapeutic-Relationship

A paper copy of the survey is available from Erin McCabe (contact information below). You may also contact her for more information about this research.

Contact information:

Phone: 780-492-2690
E-mail: emccabe@ualberta.ca

The plan for this study has been reviewed for its adherence to ethical guidelines by a Research Ethics Board at the University of Alberta (Pro00086206). Study title: Measuring the physiotherapy therapeutic relationship.

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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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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.