WHY JOIN THE MPN PATIENT REGISTRY?
The MPN Research Foundation’s patient registry, myMPN, is an online tool that collects critical data for research and serves as a repository for patient medical records and information. It’s an important resource for the MPN community that provides benefits to patients, scientists and healthcare professionals.
There is a myriad of reasons to join but perhaps the single overall reason is this: knowing that your experience, combined with other patient data, can make a significant difference to the research community!
The MPN Research Foundation’s tool—myMPN—was built based on input from patients and MPN researchers around the world. There are many great reasons to join myMPN. It provides patients with an opportunity to share information about their day to day experience with MPN with researchers in order to provide them with long-term data collection and offers functionality and convenience for patients.
Another feature of myMPN includes a “How do you feel today” (HDYFT) survey, which records symptom data in real time and can be taken as often as a participant wants. So, for example, a patient can report that they feel great one day, and not so good the next day.
The MPN Patient Registry benefits patients in many ways, including giving patients the opportunity to:
- Keep track of their symptoms.
- Monitor and record the effects of various therapies.
- Learn about clinical trials.
- Document their experiences re: how they are dealing with fatigue, depression, itching and other common symptoms in a daily journal.
- Maintain their medical records.
- Make their voice heard and their needs known to the scientific and healthcare communities.
The MPN Patient Registry also benefits researchers and healthcare professionals, giving them the opportunity to:
- Collect demographic, diagnosis and treatment information to inform research and protocol.
- Gather information to understand the best therapies.
- Understand how to better allocate resources.
- Allow researchers to focus efforts to drug discovery and approval.
- Improve patient care and life expectancy.
- Monitor the safety of treatments.
All information in the MPN Patient Registry is protected by the HIPAA Privacy Rule. HIPAA provides federal protections for individually identifiable health information held by covered entities and their business associates. It also gives patients an array of rights with respect to that information, while at the same time balancing those rights so that the disclosure of health information needed for patient care and other important purposes is permitted. Additionally, those registered with the MPN Patient Registry can change their default privacy settings to be notified when the MPN Research Foundation uses their survey data and whether they want to be contacted in those instances.
You can help by joining myMPN to make your data and your experience count! If you have already set up a profile, be sure to complete your surveys and keep coming back regularly to record how you feel and report any recent health events. Your feedback is also welcomed. You can also help by spreading the word to other MPN patients who aren’t participating.