NHF Guideline Study


Identifying and understanding stakeholder perceptions and experiences of models of care for hemophilia management in the US

About the Study

We are doing a study to explore and understand the perspectives of people providing or receiving hemophilia care in the US in one or more of the following ways:

  • Through a Specialty Pharmacy

  • Through a Hemophilia Treatment Centre or a large comprehensive care

  • Through a physician (who may or may not have expertise in hemophilia), who provides care in a non-specialized setting
We are most interested in understanding the health outcomes that matter to you and your experience providing or receiving hemophilia care.

How the Study Works

We are interested in conducting short telephone interviews (20-30 minutes) with:

  •      People with hemophilia (PWH) (age 19 or older)

  •      Parents of children with hemophilia (aged 18 years or younger)

  •      Physicians, nurses, social workers, physical therapists that provide hemophilia care

  •      Other stakeholders involved in hemophilia care (including policy makers and payers)
Interviews will be confidential; names of individuals, companies, locations, and any other identifying information will not be included in any of our reports or publications.

Interested In Participating?

To participate, you must send a signed consent form. To review or print the study information and consent forms please click on the links below.

Health Care Provider                  Parent of a Person With Hemophilia

                                           Person With Hemophilia

Insurance Representative                                               Policy Maker

Please mail signed consent forms to:

Shannon Lane, c/o MTRP
McMaster University, Health Sciences, Department of Medicine, HSC-3H50
1280 Main Street West
Hamilton, ON L8S 4K1,
OR               Send scanned, signed consents to lanesj@mcmaster.ca

For More Information Contact:

Shannon Lane, Project Coordinator
email: lanesj@mcmaster.ca
phone:(905) 525-9140 ext. 21788

This study has been approved by the Hamilton Integrated Research Ethics Board, in Hamilton, ON, Canada.

This study is funded by the National Hemophilia Foundation (NHF)