Share Your Story!

Join IMPACT to Share Your Experience with MMA or PA

It's Easy to Participate from Home!

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The Impact Study is being conducted to understand what day-to-day life is like for people with methylmalonic acidemia (MMA) and propionic acidemia (PA) as well as for parents or caregivers. These diseases can impact many aspects of life – how you feel, what you can do, and how you relate to others.

Volunteers for this study will be given the opportunity to share their range of experiences with MMA and PA and report what aspects of disease have the greatest impact on quality of life. People with MMA or PA and parents or caregivers will be asked about signs and symptoms, such as energy level, pain and vomiting, as well as how the disease affects activities of daily living, physical activities, experience at school or work, and emotional or psychological impacts.

HemoShear Therapeutics is sponsoring the IMPACT study to better understand the patient and family experience. The more we learn from you, the more we can represent the patient and family perspectives when developing and evaluating our potential new treatment for MMA and PA. 

It’s Easy! 

This study involves participating in up to two interviews via Zoom for up to two hours. No medication or clinic visits are required. The interview may include a brief chat if the patient is too young or unable to participate and a more detailed discussion with the parent or caregiver. Eligible study volunteers will be compensated up to $250 for two interviews. 

The interviews will be conducted by an outside company specializing in researching patient disease experiences, and no personally identifying information will be provided to HemoShear.

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Who Can Participate?

The IMPACT study is open to people with MMA and PA aged 8 and older as well as parents or caregivers of those aged 2 and older.  Both transplant recipients and patients who have not received a transplant can join. For children who are under 8 years old and others who cannot participate directly, the parent or caregiver will be interviewed.
 

Why Participate?

By sharing your story, you are helping researchers to better understand MMA and PA and what aspects of the disease experience are important to patients and caregivers to improve.  Eligible study volunteers will be compensated up to $250 to recognize their time and effort. 

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About HemoShear

HemoShear Therapeutics is a biotechnology company that has developed an experimental oral drug treatment for MMA and PA called HST5040. The company is conducting the HERO (Help Reduce Organic Acids) clinical study to assess HST5040 in patients 2 years and older with MMA and PA.  Please sign up if you would like to receive information from HemoShear.

Please sign up to be contacted about the IMPACT Study

I am interested in participating in The IMPACT Study and would like to be contacted by a study coordinator.

If you are the caregiver:

By submitting this form, I agree that I am 18 years of age or older and consent to the limited use of my personal data per the terms outlined in the Data Privacy Notification and Consent.

Protecting Your Privacy All video interviews via web teleconferencing will be conducted on a secure Zoom platform to protect the privacy of personal healthcare information.