New Registry FAQ
Contents
1. This is because we want to make sure to really have the current data in the ESID Registry 5 Lab values a I can t put in any results of the blood test Is it supposed to be this way What you currently see in the new ESID Registry is only the level 1 dataset which is mandatory for all patients Blood test results as well as more detailed data on clinical presentations and treatment are part of a level 2 that will be made available soon We will also transfer some of the lab data from the old registry In any case all the historic old data remains available in the old registry interface as well as the Reporting Tool or upon personal request page 4 of 42. Version 09 04 2015 ESID Registry FAQ Contents 1 Transferred patients sisccisiccccesssvcvcess secveass eesstesevibeaseseeweesssesctesasesntesssveseosaseenceasessceessvesbosassesones 2 a What can Ido if the system tells me Sorry there are no criteria available for disease XYZ a E Cece eee vine loads Sal E ied nde eee edd ee Aes seceded 2 b have an entry that has been genetically defined in the meantime e g STAT1 The system asks me to change the diagnosis because no clinical criteria are available e g for CMC What SP MAO a aa a ets vest enausuenctecscabent E ceusesaancesuscs ines E es amuneciees 2 c Where has Other hypogammaglobulinaemias gone ccccccccesssssssececeeecessesssaeeeeeeseessesesaeees 2 d Why can Inot enter a follow up for a transferred patient right AWaY cccssscccessesssssteeees 2 e What do select if a transferred patient is lost to follow up cccsccecccecessessseeeeeescessestaaeens 2 f Ifl add a new date of documentation does the new date of last news replace the one previously recorded ssrin e e a his cx Suldoreshedaeeteiviar Gertie e 3 g In which situation do have the possibility to see the option add follow up cceeeeee 3 h How often should I enter a follow up COCUMENTtAtION cceceesssseceeececesseneaeeeeecessessaeaeeeeeens 3 2 PatlOMU NAMES i scaccsisssvcisticsncvisssetcsccdencensensaccesedenacbadssccasdcaadenuessacseasuaacovb
3. eessvesesnoantenavsvecsandestenbs 3 a Ihave a patient where the name is missing e g because it was not entered in the old Registry How do add the name ccccccessscecssssececssssececsssseeecseesececsessececsesaesecsesaeeeesesaeceeseaeeeeeeaaes 3 Be GOMOUICS aa E E E TTT T sees 3 a Can I enter the name of the gene even if the patient has not ticked the genetics option in the patient consent TONM cssiciea reren ee e e eaae a E Ee E E ee 3 b Icannot find the genetics option in the Patient fOrM ccccsccccsessececsestececeeseeeesssaeeeeesaaes 3 A lgreplacementssus iuern EES ESEESE ES E ESEE 4 a There was an Ig replacement for a patient in the old Registry but is not visible in the new Registry WAYNOt resse ee e e e e O e e ee ES 4 Bi Lab E T E E E O E E E E E E 4 a Ican t put in any results of the blood test Is it supposed to be this Way ccssssccccecsseessreees 4 page 1 of 4 Version 09 04 2015 1 Transferred patients a What can I do if the system tells me Sorry there are no criteria available for disease XYZ yet We are currently working on providing clinical criteria for all diseases in the ESID Registry starting with the most frequent ones like IgG subclass deficiency Until these are available you have two options e Postpone the verification until the criteria are available e Select the diagnosis suggested by the system e g Unclassified hypogammaglobu
4. en you select a patient for the first time in the new Registry you are asked whether he she is still alive If the patient was still alive at the last time you heard of him select Yes You can enter the time point of last news later on in the Current status form This also means that page 2 of 4 Version 09 04 2015 f e Ifthe last time you saw him was a long time ago e g two or three years but your center still follows this patient select Yes e Ifthe last time you saw him was a long time ago e g more than three years and your center does NOT follow him anymore select No This is because you should only register patients currently followed by your center e If you know that the patient is now followed by another center and this is an ESID Registry Documenting Center please send us an email with the patient ID We can arrange a transfer of this entry to the other center then Current status and follow up If I add a new date of documentation does the new date of last news replace the one previously recorded No the new date of last news will not replace the one previously recorded The form Current status holds some fields which always stay the same e g HSCT if it is Yes it remains Yes for all follow ups but e g Date of last news and Ig replacement have to be entered again on every follow up In which situation do I have the possibility to see the option add follow up This option d
5. linaemia for this patient and change it once the criteria are available have an entry that has been genetically defined in the meantime e g STAT1 The system asks me to change the diagnosis because no clinical criteria are available e g for CMC What shall I do In this case select Yes to Would you like to modify the diagnosis In the next form enter the same diagnosis as before the gene The system will let you save this as a valid diagnosis Where has Other hypogammaglobulinaemias gone Other hypogammas is now part of Unclassified antibody deficiency Please read the clinical disease criteria for further information Why can I not enter a follow up for a transferred patient right away When you verify an existing imported patient Patient is alive Diagnosis is correct a documentation date is set by the system This is then the Baseline date for this patient This means that the data is treated as if the patient is being entered for the very first time in the Registry even if he had already been registered in the old system So all the data that you enter then is actually the current data You don t have to enter it as a follow up In the Current status form you can enter a date of last news manually because this date can be different from the current date e g patient was last seen five months ago What do I select if a transferred patient is lost to follow up Wh
6. oes not appear if the documentation date is today Adding a follow up only makes sense if there are news on the patient since the last documentation which is unlikely to happen until tomorrow How often should I enter a follow up documentation So a follow up should usually be filled in once per year 2 Patient names a Ihave a patient where the name is missing e g because it was not entered in the old Registry How do I add the name For the patients that you have already entered before you can add the names following the instructions given in the user manual Section 2 9 4 3 Genetics a Can I enter the name of the gene even if the patient has not ticked the genetics option in the patient consent form Yes to our best knowledge this does not violate ethical rules because the name of the gene is an integral part of the PID diagnosis I cannot find the genetics option in the Patient form This option is not available anymore because the link to the IDBases in Finland has been terminated Please always select Research only unless the patient has ticked the pharma option In this case select Full consent page 3 of 4 Version 09 04 2015 4 Ig replacement a There was an Ig replacement for a patient in the old Registry but is not visible in the new Registry Why not We have only transferred Ig replacement entries for patients with a visit date after January 1 2012
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