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"Action to Hope" Study Open to Hemophilia Community

November 29, 2017
Action to Hope Study Open to Hemophilia Community

A new survey on obesity and its effects on the hemophilia community is now available online. The survey is part of the new Action to Hope study, which was developed in collaboration with the National Hemophilia Foundation, Hemophilia Federation of America (HFA), and obesity experts. It is sponsored by Novo Nordisk.

The study seeks to shed light on barriers people with hemophilia who are obese or overweight have to losing weight, including joint bleeding or bleed risk, mobility limitations due to joint disease, and fear about doing more activities.

The study authors believe that further insights are needed to guide actions promoting effective care for obese/overweight people with hemophilia, support collaborative actions between HTCs and weight management centers, and educate the hemophilia community and support advocacy.

The study is open to:

Adults (age 18+) with hemophilia A or B who are overweight or obese
http://www.surveycenter.com/actiontohope/pwh

Spouses/partners of an adult (18+) with hemophilia and obesity/overweight
http://www.surveycenter.com/actiontohope/partner

Parents of an adolescent (ages 12-17) with hemophilia and obesity/overweight
http://www.surveycenter.com/actiontohope/parent

The questions asked will look at attitudes, awareness and perceptions of obesity, interactions and experiences with weight management, and insights on barriers to weight loss. The survey will take approximately 60 minutes. Upon completion, participants will be sent a $125 Amazon gift card as a token of appreciation.

Please note: Name and email address will be kept confidential. A study number will be given to participants and used on study records/information wherever possible. All identifying information will be de-identified.

Participation in this survey is voluntary. Participants have the right to refuse participation in the study or to withdraw at any time.