Healing ALS Registry Observational Data Collection (HAROS) Application and Informed Consent (Non-US Resident)

All personal information will be kept strictly private and will not be shared. Review ahead and plan to fill this out in one sitting. Your information will not be saved.

Please check each prerequisite, then click Next:(Required)

I have completed the 7 Day Quick Start Essentials Course on HealingALS.org.

I have completed tabs 1, 2 & 3 of my Profile at ALSRegistry.org.

I have completed the current Monthly Check-in at ALSRegistry.org

I have uploaded my ALS/MND/PLS diagnosis document to my Profile at ALSRegistry.org.

I have read and agree to the Healing ALS Registry Observational Study Information document.

I am and will remain a non-smoker.

I am NOT a United States resident and am at least 18 years of age. Are you a US Resident? Click here.

Personal Details

Name(Required)

First Last

Email(Required)

Phone Number(Required)

Address below(Required)

Street Address City State / Province / Region ZIP / Postal Code Country

Diagnosis

Date of First Symptoms(Required)

Diagnosis Date(Required)

Age at Diagnosis(Required)

Type of Onset(Required)

Limb Onset

Bulbar Onset

Multifocal (Both)

Studies show that a positive mindset positively affects health outcomes. Your answers will be kept strictly confidential.

Accomplishments & Best Moments

List 6 Accomplishments in your life you are proud of.

1.(Required)

2.(Required)

3.(Required)

4.(Required)

5.(Required)

6.(Required)

List 6 Best Moments in your life.

1.(Required)

2.(Required)

3.(Required)

4.(Required)

5.(Required)

6.(Required)

Bucket List & Life Statement

List 3 fun bucket list items that you tentatively plan to do in the next 12 months and the month you plan to do it. This can be something as simple as a museum visit or an outing with grandchildren, or more involved such as visiting Disneyland. Bucket List Item 1

Bucket List Item 1(Required)

Bucket List Item 2(Required)

Bucket List Item 3(Required)

Type Ideal life statement here (100 to 300 words)

INSTRUCTIONS. See example below.

For healing it is important to focus on what you want. Write your ideal life in a minimum 100 words. Assume you are in perfect health and money is not an issue. Write in present tense and include emotional words describing how you feel.

Include:

What date it is.
Where you want to live—perfect city/country, house/apartment/condo.
Who you want to live with—spouse/partner/children/parents/etc.
What type of work you would like to be doing.
How will you serve others, or volunteer?
Include fun things such as travel/sports/hobbies/events/concerts.
Make sure it feels good to read it! Keep revising it until it feels great!
This is a living document. Feel free to adjust and change with time.

Ideal Life Statement.(Required)

Example: I am enjoying my home in a great neighborhood in Austin, Texas. Although I live by myself, I am surrounded by my children and grandchildren who bring me much joy. We do family events often and babysitting for the grandchildren keeps us close. I feel peaceful sitting on the back deck enjoying nature and listening to the birds. I just returned from a Joe Dispenza conference and I feel happy and content. I am enjoying my pilates classes and social tennis, which make me feel energetic and refreshed. I am so grateful to be healthy and active. I am looking forward to visiting with my sister in Florida, and spending a week with my children and grandchildren at the beach in Avalon. I enjoy my part-time job. I love working from home and making a difference in people lives. I also feel good volunteering with phone support for those who need it. I look really young. The other day someone commented my daughter and I looked like sisters!

Consent

I agree:(Required)

to participate in this study for a minimum 1 year.

to complete the Registry Check-in each month by the 5th of the following month.

that all information presented by Healing ALS is for educational purposes only, not medical advice and that any health care decisions are my own choice.

that my typed name below serves as my electronic signature

Please read the text below and confirm the information is true.

I freely agree to enter my data into the Healing ALS Registry by the 5th of each month for at least the one-year study period. I have the option of continuing to be part of the study indefinitely if I meet the requirements. Study participants can withdraw from the study at any time by sending an email to study@healingals.org. Study participants, along with approved researchers may have access in the future to de-identified data (stripped of private information) of other members for the purpose of learning about the effectiveness of various therapies for ALS. Neither researchers nor study participants will have access to any personal information other than their own. Only study administrators will have access to my personal information since they may need to contact me. This information is confidential and will not be shared with anyone else. All of the information presented by Healing ALS or any of its agents or speakers is intended for educational purposes only and is not medical advice. I have not been coerced to participate in this study. All of the health care choices I make are of my own free will based on my own research, advice from my own medical practitioners and other sources. For more information, questions or concerns, please contact study@healingals.org. The Private Membership agreement I signed when I joined the Healing ALS Registry remains in effect. I take responsibility and assume all liability for my own medical decisions and do not hold Healing ALS, Healing Advocates Registry and Ministry nor its associates responsible for any liability.

Type your Name as your Signature

Date