Any structured database with ITP patients and treatments?

[eagle2]

With all this individually responsive / non responsive treatments a searchable structured database would be immensely important, of course anonymous.

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There is a UK ITP Registry for research purposes but not available for patients to view. If your hospital joins in they send a sample of your blood to the Royal London for inclusion.

ukitpregistry.com/

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If you haven't read much about ITP yet, this is the document to read as it is the latest international guidelines for the diagnosis and treatment of ITP. Although it lists splenectomy as a possible treatment, it is actually going out of fashion in the UK as eltrombopag (Revolade) and romiplostim (Nplate) offer real treatment prospects over splenectomy.

bloodjournal.hematologylibr...

[eagle2]

Hello CamdenGirl thank you very much for the answer. Yes even if I completely new to this ITP universe I have read through loads of material. The striking thing is how individually this ITP disease and all the different therapies works/not works. Its obliviously many different things, ages, sex, other health aspects, trigger events etc, that play roles. To find a structured way to search for similar patients, treatments, experiences would have been fantastic. This ITP support forum is a fantastic place and a big reviles.

I have wrote my experiences so far on:

itpsupport.healthunlocked.c...

[NickyD in reply to eagle2]

Hi ealge2, ITP is a very frustrating condition. You can have a group of people on the same drug, given at the same time, on the same dose and all can react differently. As you say, it depends on many different things. The consultants that treat the patients tend to have a course of drugs that they try to see which (if any) work for the patients. Bearing in mind each drug takes a time to take effect and there are many different doses you can have over different periods of time, it can take months to find that the drug is not right for you. Then you go back on the roller coaster trying another drug to see if that works. The ITP Registry is voluntary, but if everyone with ITP were to go on it then it would help the clinicians see if there can be any conclusions to be extrapolated from the data. At present they work to a wait and see policy. If the paitent is not bleeding then wait and see. They want to move away from the psychological dependence many people have on the actual platelet count. If the patient is not actively bleeding and there are no signs of bruising then leave them alone. NickyD

[eagle2]

Hello NickyD thank you for your reply. And yes this is a fantastic forum and big relive thank you all a lot! Cant tell how much it means right now.

As in my profession I work a lot with datasystem, database design, search engines and defining marketing campaigns etc based on lot of statistical information and matching criteria.

I found this area with such of lot of material, personal data (age, sex), health and medication background information (drugs, vaccines etc), different therapies and results to be so unstructured so there is now way to search, but to hope for some personal response.

Would it be possible do you think of a way for people on this forum to volunteer and enter their information in a database? Of course to keep this anonymous and with full integrity kept. But to make all this information more available and hopefully more useful to find good matches of individuals and treatments that has worked and not worked. I found it frustrating to see so limited search and matching possibilities.

Eagle2

[regsmum in reply to eagle2]

I think this would be a fantastic idea - I think that many of us who are new to ITP would benefit from knowing the likelihood of different outcomes. The wait and see approach is extremely stressful and frustrating. It also seems that the anecdotal approach is skewed as the most interesting stories are the scariest ones, and the people who check the group regularly and reply to questions are the ones who need or have needed support and reassurance. There aren't many "I had ITP for 6 months but got better and have been fine for years" blogs, but I'm sure (I hope) that those experiences are out there too.