Using Backpack Health for the Marfan Foundation Health Fair

Whether you use an iPhone, Android, desktop or laptop, Backpack Health is a tool to help you organize and share your medical info for the Marfan Foundation Health Fair. 

After the Health Fair, you can continue to use Backpack to manage ALL of the health information for you and your loved ones in one secure place.  

When you sign up for Backpack Health through this link, you’ll become part of the Marfan and Related Disorders International Patient Registry. By being part of the Registry, you will be contributing data to help ongoing Marfan and related disorders research. 

Adding as much detailed health information to your Backpack as you can prior to the Health Fair will help you get the most out of your visit with the Health Fair providers and allow you to contribute the most for research.
 

 

STEP 1

Join us on Backpack Health and become part of The Marfan and Related Disorders International Patient Registry

When you sign up and join, we’ll take you through some detailed information about how we care for your privacy as well as some information regarding the Registry. Even if you’re signing up on behalf of a loved one you care for, you need to create a profile for yourself first! During this process, you’ll create your Backpack profile and add others you care for to your Backpack that you’d like to join the Registry (like any of your children with Marfan or a related condition). Later in the instructions we’ll also show you how to add people to your Backpack who aren’t going to be part of the Registry (like children who don’t have Marfan or a related condition).

STEP 2

Take the Registry Welcome Survey

Once you’ve joined the Registry for yourself and/or your loved one, you can start adding info to your Backpack(s) by completing the Registry Welcome Survey. 

The answers you provide in the Welcome Survey will be added to your Backpack or your loved one’s Backpack. Completing the survey adds a lot of information that will be useful for the Health Fair quickly and easily.

STEP 3

Add more detailed health information for yourself and your loved ones

Once you’ve completed the survey, you should have your primary diagnosis (even if it’s suspected) as well as some of the major features of your condition. Now, you can add even more health information for yourself and your loved ones. 

Whether you’ve chosen to complete the Welcome survey or not, we have a Comprehensive Checklist of ALL the health information you should add to your Backpack as well as a note on adding Files at the end of these instructions. 

 

STEP 4

Share Your Information

Once you’ve got all of your health info added to Backpack Health, here’s how to get it to the Health Fair Providers! If you’ve joined the Registry, you’ll have a Marfan and Related Disorders International Patient Registry Share Card in your Backpack. But, that card is solely for research and does not contain any identifying information about you. You also can’t attach files to it. 

So, for the Health Fair, you’ll need to Create a new Share Card and add all of the health information you’d like to share with a Marfan provider at the Health Fair. Here’s how:

  1. Navigate to your Share Cards and tap the (+) button in the lower right to create a custom card. If someone else you care for is the Health Fair participant, navigate to their profile and their Share Cards
  2. Change the title from “untitled” to Marfan Foundation Health Fair 2019 and hit the check mark
  3. Select information to include by tapping into each category. You can include everything in a category by simply tapping or clicking on the open circles
  4. Include all of your profile information (name, date of birth, etc.)
  5. Include all health entries related to your condition (conditions, symptoms, medications, procedures, labs or tests, measurements, etc)
  6. Include all files related to your condition (see above for list of possible files to include). Genetic testing reports, radiology reports, other diagnostic reports, etc. You can use a scanner or a scanning app on your mobile device to create multi-page PDFs which can then be added to Backpack. For more information on organizing Files you can visit our Help Center.
  7. Add your uploaded Health Fair Application to this Share Card. 
  8. Hit Done to save your Share Card

Once you’ve added all of your info to the Marfan Foundation Health Fair 2019 Share Card, here’s how to share it with the Marfan Foundation providers:

  1. Tap or click your Share Card to open up the details
  2. Tap or click Enable at the top of the share card. This will enable the URL and generate an access code that you can share with the foundation. This URL gives the Health Fair providers a way to view your health information prior to and during the Health Fair. The URL is secure and cannot be opened without the access code. After the Health Fair, you can restrict access by changing the access code.
  3. Once you’ve enabled the URL, tap or click Copy next to the URL. Then you can paste the URL and access code in an email to medicalrecords@marfan.org with “Medical Records” in the subject line. 

STEP 5

Manage Your Health

At the Marfan Foundation Health Fair we will have people to assist you in learning how to organize health information in your Backpack and even help you add new information that comes from the Marfan specialists. You can also take a picture of any notes from the Health Fair and attach them as Files in your Backpack.

If you have any questions about using Backpack Health or any trouble with the process, just let us know! We’re always happy to help. You can reach us from within the app (tap or click your initials and select Contact Us) or at help@backpackhealth.com. When you’re ready to get started, here’s that link again:
 

 

Checklist of Health Information to Include in your Backpack

Feel free to use this as a guide, but you may also search for more specific items and additional items not listed here in Backpack

Measurements
Please add your most recent measurements to your Backpack

  • Height
  • Weight 

Major conditions
Please add if you have a suspected or confirmed diagnosis for any of the following:

  • Marfan syndrome
  • Vascular EDS
  • Ehlers-Danlos syndrome
  • Loeys-Dietz syndrome
  • FTAAD (Familial Thoracic Aortic Aneurysm and Dissection)
  • Shprintzen-Goldberg Syndrome
  • Beals syndrome
  • Other 

Other conditions and symptoms
Cardiac
:

  • Aortic root aneurysm
  • Aortic root dilatation
  • Ascending Aortic dilation 
  • Ascending aortic aneurysm rupture 
  • Aortic dissection
  • Ascending aortic dissection  
  • Aneurysm/dissection other than aorta
  • Descending aortic dissection
  • Abdominal aneurysm
  • Aortic stenosis
  • Bicuspid aortic valve
  • Endocarditis
  • Mitral valve prolapse
  • Mitral valve regurgitation
  • Tricuspid valve disease
  • Hypertension
  • Irregular heart beats (arrhythmia)
  • Palpitations
  • Arterial tortuosity (arteries that twist)

Eye:

  • Dislocated lenses
  • Retinal detachment
  • Cataracts
  • Glaucoma
  • Double vision
  • See shadows
  • Visual floaters (spots or flashing lights in vision)
  • Visual field defects
  • Nearsightedness (can’t see distance)
  • Far-sightedness (can’t see close)
  • Carotid cavernous fistula

Physical Features:

  • Easy bruising
  • Widely spaced eyes
  • Hypermobile joints (double joints)
  • Contractures – Toes (hammer Toes)
  • Contractures – Fingers
  • Stretch marks
  • Thin, translucent skin
  • Flat feet
  • Kyphosis
  • Hip deformity
  • Pectus deformity
  • Club foot
  • Cleft palate
  • Wide uvula
  • Split uvula

Symptoms:

  • Rupture of intestine (or other organ rupture)
  • Hernia
  • Spontaneous pneumothorax (collapsed lung)
  • Asthma
  • Migraine headaches
  • Sleep apnea
  • Chest pain
  • Joint pain
  • Back pain
  • Foot pain
  • Dural ectasia 
  • Spondylolisthesis (vertebral slipping) 
  • Joint dislocations
  • Osteoporosis
  • Craniosynostosis
  • Cervical spine instability
  • Gastrointestinal problems

Allergies
Please list any food, medication or other allergies

Procedures and Surgeries
Please add any of the following procedures you have had and attach appropriate operative reports as files to each

  • Pulmonary function tests
  • Slit lamp exam
  • Eye muscle surgery
  • Lens removal
  • Cataract surgery
  • Retinal detachment repair
  • Scoliosis surgery
  • Pectus surgery
  • Joint surgery
  • Aortic root replacement - valve sparing
  • Aortic root replacement - mechanical valve
  • Aortic surgery (other)
  • Composite graft 

Labs or Tests
Please add any of the following and attach any relevant reports as files to each

  • Echocardiogram 
  • Pulmonary function tests 
  • CT scan
  • MRI scan 
  • Slit lamp examination

Genetic Results
Please include which genes were tested as well as results and attach relevant genetics reports as files to each

Medications
Please give the name, dosage, frequency, and dates taken for each medication

 

A Note on Adding Files to Backpack

***When adding any files to Backpack, be sure to give them a name and date (e.g., Genetic Test Results - October 2018, or Echo Report 2017, etc.) to make it easier for you and the Health Fair providers to locate the correct file.  You can also attach files to a specific Health Entry (e.g., a gene mutation) to help you stay organized! 

The Marfan Foundations recommends you add the following files, to help you get the most out of your Health Fair visit: 

  • CT scan reports (head, neck, brain)
  • MRIs of the spine, cardiac MRIs
  • Echocardiogram reports or images
  • X-ray reports or images of the knees, feet, and spine
  • Surgical (operative) reports: specifically cardiac surgery, spine surgery, eye surgery
  • Colonoscopy reports
  • Carotid artery ultrasounds
  • Electromyography
  • Eye reports:  visual field studies, OCT scan, retinal scans
  • Genetic testing reports

 Sometimes imaging files (like MRIs and Echos) are in the form of CDs. For the Health Fair, it’s best to mail these in so that they can be reviewed by the Health Fair providers. The content of these CDs will not automatically be uploaded to Backpack. You would need to upload the .zip or individual files yourself.

Please send any CDs to:

Bruno DaSilva
The Marfan Foundation
22 Manhasset Avenue
Port Washington, NY 11050

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