There are 5 apps in Haemophilia


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FactorTrack

FactorTrack
developed by Anupam Godbole; Intouch Solutions, USA


RemindersSupport to deal with symptoms/disabilitiesTrackersInformation

English

Cost: Free

Helps to track and record haemophilia-A factor-VIII infusions.

“Having a well-kept record of infusions can help the team at your haemophilia treatment centre get a better picture of how your clotting factor is working. For people on prophylaxis, being able to spot a trend of bleeds can help you and the team develop a plan to prevent them. If you’re using clotting factor on-demand, you might not realise how many bleeds you’ve had in a year, until you see all the data together. Having an infusion log in an electronic format has many benefits. Prophylactic users can log multiple infusions over a span of dates with a few simple clicks. Too busy to log onto your home computer? Record the infusion on your mobile infusion-log app while you’re on the bus (unless you’re the driver). The ‘FactorTrack’ app has an alarm feature that alerts people to take a dose. The alarm can be set for a certain time for each infusion needed. Options include: set days per week (such as Monday, Wednesday, Friday); once a week; every day; or every other day.” Arizona Hemophilia Association, USA | http://bit.ly/MSIHZQ


Tags: Medical

HemaGo

HemaGo
developed by CDM Princeton (CDMP)


Allows networking with other people like me / Family / FriendsRemindersSupport to deal with symptoms/disabilitiesSelf-monitoringTrackersInformation

English

Cost: Free
Tool for recording and tracking the symptoms, treatment and experience of living with haemophilia.
“Novo Nordisk’s ‘HemaGo’ app was designed to be especially helpful for patients with inhibitors. It was developed to improve communication between haemophilia patients and their caregivers. Because treatment for inhibitors can be so complicated, the app makes it easier to keep track of all the details. The HemaGo app allows users to record information on all medications that patients are using, including over-the-counter meds. This gives doctors a better overall picture of the patient, which can help prevent possible negative interactions. HemaGo can also record how much factor is used, and the reason for each infusion. Another useful feature of HemaGo is that it lets you record other data about a bleeding episode besides just the basics. What was the level of pain? How did the bleed affect work, school, or daily life? Where was the bleed, and how long did it last? This info is valuable for evaluating treatment regimens. The data that you enter into the HemaGo app syncs with Novo Nordisk’s website, called ‘Changing Possibilities in Hemophilia’, and can be shared with doctors or healthcare teams. (The company’s website states that Novo Nordisk does not have access to patient-specific information. The company’s access is restricted to generic information—“de-identified”—in which the data has been stripped, so that the individual source cannot be identified, in accordance with Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy and Security Rules.) You can use the app to create customised reports through Changing Possibilities, and then print out or email the reports to your healthcare team. HemaGo also allows you to set up reminders on your phone for appointments or treatments, or log prophylactic treatments.” ‘A Thread of Red’, Arizona Hemophilia Association, USA | http://bit.ly/1fqJoZm


Tags: Health, Wellness & Care in the Community (HWCC)

Hemolog

Hemolog
developed by Michael Schultz, USA


Support to deal with symptoms/disabilitiesSelf-monitoringTrackers

English

Cost: Free

Infusion log for people with haemophilia.

“One patient’s solution. When Michael Schultz decided that logging his factor infusions was tedious, he took matters into his own hands and developed an app called ‘Hemolog’. The new app offers several advantages over paper (or even computerised logging systems). Your log is always with you, and can easily be e-mailed to your haemophilia treatment centre. ‘Hemolog’ also standardises entries, allowing users to simply touch a location on a map of the body. The app walks users through the logging process, and automatically fills in some information. Most importantly, it allows users to filter their data. For example, they can instantly create lists of every bleed in a particular joint.” HemAware magazine, 2010, National Hemophilia Foundation, USA | http://bit.ly/pJOK3m


Tags: Medical

MicroHealth Hemophilia

MicroHealth Hemophilia
developed by MicroHealth LLC


Improving communicationSupport to deal with symptoms/disabilitiesSelf-monitoringTrackersInformation

English / Spanish

Cost: Free
Helps people with haemophilia track their condition and report progress to their doctor.
"It allows me, as the parent of a child with haemophilia, to quickly log when my son has been infused, and not have to keep a paper trail to show his doctors. It also has a reminder function for me (should we be out of our normal routine) that helps us remember that it is an infusion day. The app also allows us to upload photos of bleeds, to be able to watch what they are doing, and gives us information in graph form about my son's annual bleed rate. Finally, all of this information is communicated to my son's doctors, so that they can see what his body is doing, as well as check his adherence to his infusion schedule, without having to be in the office. The only drawback for us is that our pharmacy will not use the app, so that we could take advantage of using it for our monthly refills." Parent of a child with haemophilia | PatientView survey, November 2013


Tags: Medical

MyFactor

MyFactor
developed by BioRX LLC


Allows networking with other people like me / Family / FriendsRemindersSupport to deal with symptoms/disabilitiesSelf-monitoringTrackers

English

Cost: Free
Helps people with haemophilia to record and track bleeds and infusions, and share the information with doctors.
“BioRx Introduces a smartphone app for tracking haemophilia healthcare information. … “ ‘MyFactor’ is the first haemophilia app from a specialty pharmacy,” said Eric Hill, co-founder of BioRx. “This creates a unique platform for BioRx customers and staff to more efficiently communicate, exchange detailed treatment information, and helps both parties to anticipate and plan for future needs.” Today, the vast majority of people with bleeding disorders receive homecare pharmacy and infusion services to help manage their day-to-day care. In moderate-to-severe cases, patients typically self-infuse and receive monthly shipments of their clotting-factor medication and infusion supplies. Physician visits may not be frequent, but interaction with the pharmacy is routine. Keeping track of haemophilia bleeding episodes and treatments (as often as 3 or 4 times per week) can become a burden to patients and caregivers, especially over time; however, communicating these events is important to monitoring for potential joint damage from repeat bleeds, determining the need for dose adjustments, and diagnosing other issues that may impact health outcomes. Bleeding-disorder patients and caregivers can use a ‘wizard’-style graphical interface on MyFactor to log details of treatments and bleeding episodes–including type, cause, location, levels of pain and severity. A unique feature of the app gives users the option to scan the barcode of almost any brand of clotting factor in order to record its lot number. Maintaining a record of lot numbers is particularly important in the case of product recalls. MyFactor can also generate historical reports in PDF and CSV formats at the touch of a button–customised by date range, keyword or event type. Reports from the app can easily be shared with others by selecting email addresses from the iPhone contact list, while access to the app can be password-protected on the device itself. Additionally, patients can use MyFactor to set up regular infusion reminders and alerts, add detailed notes, switch between multiple user accounts, and attach photos to show active bleeds, range of motion, or other information that may be useful to the healthcare team.” CheckOrphan, Switzerland and USA | http://bit.ly/1gghkXy


Tags: Health, Wellness & Care in the Community (HWCC)

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