Being involved in biobanking or a medical databank
As the involvement in biobanking and or medical databanks is one of PatientPartner’s themes we asked our respondents:
Is (Has) your patient organisation (been) involved in biobanking or a medical databank ?
We define a biobank as an organised collection of human tissue samples, cells, bodily fluids or parts thereof, including DNA and RNA, in combination with the accompanying medical data for use in clinical trials, scientific research and/or medical treatment. A medical databank e.g. a patient registry can be defined as a database of all the patients and their condition in a certain region or worldwide who share some characteristic, such as a certain condition or medication.
Other types of information that can be collected in a patient registry are e.g.: state of residence, height, weight, gender, genotype, length of hospitalizations, etc.
24 % of the responding patient organisations have members that have contributed to a medical databank or biobank with DNA, cells, other biological material, or data.
13% has been involved in setting up a biobank while 22% has been involved in setting up a patient registry. The detailed descriptions that were given by the respondents confirm this as patient described to be involved in several patient registries and bio banks.
Please click here for an overview.
12% of all respondents were active involved in maintainingg and upholding a biobank or medical databank. A further 19 % has lobbied for the setting up of either a biobank or medical databank. Finally 9% of all respondents have been involved in raising funds for a biobank or a medical databank on the condition that their patient organisation represents.
11% of all respondents said to be involved in other ways than in lobbying, setting up, contributing to, financing or raising funds for a biobank/medical databank.
One of the most described ways of involvement was the providing their members with information on the biobank or medical databank. Examples ranges from creating a patient information leaflet to raising awareness to the possibilities to contribute to a biobank by pointing their members into the right direction.
Furthermore two respondents said to be active as a member of a steering committee that governs either a biobank or patient registry. Finally one example was given in which the patient organisation was involved in making a “prospective donor scheme” in which the inclusion criteria of patients who would like to contribute to a biobank are described.
Please click here for the graph of the involvement of patient organisations in biobanking and medical databanks.
Regional difference in the involvement of patient organisations in biobanking or a medical databank
The survey showed no differences in the active involvement of respondents from North-West and Southern Europe in biobanking and medical databanks.
The respondents from Central and Eastern Europe showed a lower frequency of active involvement in co financing and raising fund for a biobank or medical databank as well as in the category of setting up and maintaining a biobank or medical databank in comparison to respondents from the other two regions.
Please click here for the graph comparing the involvement of Patient organisations from the different European regions.
Disease-group specific differences in being involved in Biobanking or a medical databank
The survey showed that respondents that represent a patient organisation for rare conditions showed a higher frequency of involvement in all levels of involvement in biobanking and medical databanks as compared to the common condition representatives.
Please click here for the graph comparing the involvement of Patient organisations from the different European regions.