Application for HCMA Partnership Project

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Please complete the application below for consideration of a partnership project with HCMA

Name *

First and last name

Email *

Phone number *

What type of organization do you represent? *

HCMA Recognized Center of Excellence

Student (graduate or doctorate level)

Biopharma/medical device industry

Another cardiac-related non-profit

A non-cardiac-related non-profit

Corporate business

Think tank or research center

Other:

Name of organization you are representing.

Have you partnered with HCMA in the past on collaborative efforts or research?

yes

Clear selection

Please provide a brief description of your project or request? (250 words) *

Describe how HCMA will be involved, including if patient data is to be collected. (250 words)

If patient data is to be collected, please describe how it will be collected, what safeguards will be put in place for it to remain confidential, who will have access to the data, and how will the data ultimately be destroyed at the end of the project. (500 words)

Describe your proposed statistical analysis plan. Specifically, what is the ‘research hypothesis’ and how will it be tested using what decision rules and with what statistical power. If it is a purely descriptive study, please indicate such and describe what level of precision you believe it will yield (e.g., 95% confidence intervals of +/- how much?). (500 words)

Describe how this project will impact HCM patients and improve their health and wellbeing? (250 words) *

How well does this project align with the mission of HCMA? [HCMA mission: "Providing support, advocacy, and education to patients, families, the medical community, and the public about hypertrophic cardiomyopathy, while supporting research and fostering the development of treatments."] *

Not aligned

Significantly aligned

Which HCMA objectives does the projecty propose to meet? (Check all that apply.)

Educate about the symptoms and treatment options for patients, their families and their medical providers.

Advocate for policy/ legislation that improves disease detection, healthcare access, matters of importance to the community.

Develop and maintain a network of support for individuals with HCM and their families.

Increase accessibility to specialized healthcare professionals providing evidence-based treatment of HCM.

Promote and publish research of HCM and broaden access to results with the ultimate goal of eradicating the disease.

Partner with complementary organizations that will help further the mission of the education about, and management of the disease.

Generate appropriate funding for a sustainable organization and ongoing patient and physician engagement.

Were patients or caregivers involved in the design of the project or will they be upon its completion? *

yes

Not applicable

How will this project add to the knowledge of HCM diagnosis and treatment? (CHECK ALL that apply) *

Improve likelihood of timely and accurate diagnosis

Provide knowledge for better treatment options

Promote a "shared decision making" process for patients and providers

Further the adoption of the AHA/ACC Guidelines

Raise awareness of HCM among the general population

Establish or reinforce collaborative efforts wtih HCMA

Be utilized for social media postings and outreach

Be utilized for patient education

Other:

Required

What is the estimated timeframe needed to complete this project? *

Less than 6 months

6-12 months

12-18 months'

18-24 months

I'm unsure at this time

Has funding been acquired for this project? If so, please provide the type of funding sources (e.g., biopharma, grant) and if not, please provide any information on proposed funding. *

How will the findings or outcomes of this project be made public to benefit the HCM community at large? (Check all that apply) *

Publication in peer reviewed journal

Patient education materials

Conference abstract or presentation

Future research

Blog post/social media posting

Change in care management of HCM patient

Other:

Required

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