What is the IPPF Natural History Study?
Launched in March, 2017, the IPPF Natural History Study is a new patient registry sponsored by the National Organization for Rare Disorders (NORD) and the US Food and Drug Administration (FDA). This online data system collects, stores, and retrieves patient data for analysis in research studies. The IPPF Natural History Study serves to:
- Provide a convenient online platform for patients or their legally authorized representative to report cases of pemphigus and pemphigoid
- Conduct a prospectively-planned natural history study that will result in the most comprehensive understanding of both diseases and their progression over time
- Characterize and describe the pemphigus and pemphigoid population as a whole
- Assist the pemphigus and pemphigoid community with the development of recommendations for standards of care
- Assist researchers studying the pathophysiology of pemphigus and pemphigoid
- Support the design of clinical trials that explore new pemphigus and pemphigoid treatments
The more data we can collect, the better the information we can give to researchers, the sooner they can find better treatments, earlier diagnosis, and one day – A CURE! The Natural History Study is designed to help the medical and research community understand illness trends, treatment outcomes, disease burden, and some important demographic information about patient age and gender. With this vital information from large numbers of participants, we can better advocate for resources to improve patient support and doctor education, as well as accelerate research.
I already participated in the old IPPF Patient Registry. Is this different?
Yes, this is a different study. Thank you for participating in the previous IPPF Patient Registry. Even if you participated in another registry, please also join the Natural History Study. Your information is crucial to advancing P/P research.
The new IPPF Natural History Study is different in that it is a longitudinal study. This means you will be asked to provide updates regarding your disease progression and treatment over time. Longitudinal studies provide researchers with a more comprehensive set of disease and treatment information.
*NOTE: If you participated prior to March 31, 2017, it was the old registry. Your information will not be transferred into the new Natural History Study. Please join the new study here.
What types of data will be collected in the Natural History Study? Is the data secure?
The IPPF Natural History Study collects data on the following topics:
- Medical and diagnostics
- Treatment and disease progression
- Management of care
- Quality of life
The IPPF Natural History Study follows strict government guidelines to assure patient information is protected. The registry platform is served over HTTPS, providing encryption of traffic to prevent eavesdropping and man-in-the-middle attacks. Communications between the registry platform application server and the database are also encrypted.
How Do I Participate?
Begin at the secure Natural History Study. Answer some simple treatment, medication, and lifestyle questions. That’s it! Your information is collected, stored, and ready when researchers need data on pemphigus and pemphigoid patients.
What information will I need to answer the questions?
You will want to get a few things ready before you begin:
- Current pemphigus or pemphigoid prescription medication (the bottles work best if you have them). You should also know how long you have been taking each medication
- Past pemphigus or pemphigoid prescription medication history, including reason(s) why you stopped taking any previous medications
If you have any questions, you may email email@example.com. We’ll be happy to assist you and get you started right away!
Interested in developing a registry sub-study?
We are introducing a new multi-stakeholder model of engagement, whereby the IPPF, in collaboration with researchers spanning industry, academia and medicine, can establish sub-studies to propel research for rare conditions. This new functionality allows for partnerships that bring stakeholders together to accelerate the pace of research for rare conditions, while ensuring patient communities remain empowered as partners throughout the process.
Let us know if you are interested by emailing firstname.lastname@example.org.