We have been working with the CARIS team since 2025. CARIS records people with congenital anomalies and rare diseases across Wales. For rare diseases, CARIS collects a small amount of information about each person and their diagnosis. This can then be linked to other datasets, like those that capture prescribing and hospital activity.
To make sure that the national registration data is as complete as possible for each rare disease, CARIS collects data from many data sources. Patient registers, like that provided by the MSA Trust, can play an important role in giving people the chance to make sure that CARIS is including them.
That is why when people sign up as part of the MSA Trust community, they can also choose to have their data shared with CARIS (people living in Wales only).
By sharing our data with CARIS we aim to better understand MSA. The data can help clinicians, researchers and charities to provide better support for those living with the condition.
The national CARIS register is also used for research and planning by helping to:
- look at numbers and trends of people diagnosed with congenital anomalies and rare diseases
- improve health, care and services for people with these conditions
- support patients by providing information about their condition
- give the NHS information to help it further improve the services it provides.
There are strict controls on who can see the information held by CARIS to protect your confidentiality. CARIS will never publish anything that would identify you.
If you would like to find out more about CARIS visit their website here – https://phw.nhs.wales/services-and-teams/caris/.
If you live in Wales and would like your information to be passed on to CARIS, please contact us and we will be happy to support you. You can opt-out at any time.
Welsh Translation:
Gwasanaeth Gwybodaeth a Chofrestr Anomaleddau Cynhenid Cymru (CARIS)
Mae Ymddiriedolaeth MSA yn rhannu data gyda’r Gwasanaeth Gwybodaeth a Chofrestr Anomaleddau Cynhenid Cymru (CARIS), sy’n rhan o Ymddiriedolaeth GIG Iechyd Cyhoeddus Cymru. Mae CARIS yn casglu gwybodaeth i nodi faint o bobl yng Nghymru sydd â chlefyd prin a natur eu nodweddion.
Rydym wedi bod yn gweithio gyda thîm CARIS ers 2025. Mae CARIS yn cofnodi’r bobl sydd ag anomaleddau cynhenid a chlefydau prin ledled Cymru. Ar gyfer clefydau prin, mae CARIS yn casglu ychydig bach o wybodaeth am bob person a’i ddiagnosis. Yna gellir cysylltu hyn â setiau data eraill, fel y rhai sy’n cofnodi presgripsiynu a gweithgarwch ysbytai.
Er mwyn sicrhau bod y data cofrestru cenedlaethol mor gyflawn â phosibl ar gyfer pob clefyd prin, mae CARIS yn casglu data o lawer o ffynonellau data. Gall cofrestrau cleifion, fel yr un a ddarperir gan Ymddiriedolaeth MSA, chwarae rhan bwysig wrth roi cyfle i bobl wneud yn siŵr bod CARIS yn eu cynnwys.
Dyna pam, pan fydd pobl yn cofrestru i fod yn rhan o gymuned Ymddiriedolaeth MSA, gallant hefyd ddewis rhannu eu data â CARIS (pobl sy’n byw yng Nghymru yn unig).
Drwy rannu ein data gyda CARIS ein nod yw deall MSA yn well. Gall y data helpu clinigwyr, ymchwilwyr ac elusennau i roi gwell cefnogaeth i’r rhai sy’n byw gyda’r cyflwr.
Defnyddir y gofrestr CARIS genedlaethol hefyd ar gyfer ymchwil a chynllunio drwy helpu i wneud y canlynol:
- edrych ar niferoedd a thueddiadau pobl sydd wedi cael diagnosis o anomaleddau cynhenid a chlefydau prin
- gwella iechyd, gofal a gwasanaethau i bobl â’r cyflyrau hyn
- cefnogi cleifion trwy ddarparu gwybodaeth am eu cyflwr
- rhoi gwybodaeth i’r GIG i’w helpu i wella y gwasanaethau y mae’n eu darparu ymhellach.
Er mwyn diogelu eich cyfrinachedd, mae rheolaethau llym ar waith ynghylch pwy all weld yr wybodaeth sydd gan CARIS. Ni fydd CARIS byth yn cyhoeddi dim byd a fyddai’n golygu y gallai rhywun eich adnabod
Os hoffech chi gael rhagor o wybodaeth am CARIS, ewch i’w gwefan yma – https://icc.gig.cymru/gwasanaethau-a-thimau/gwasanaeth-gwybodaeth-a-chofrestr-anomaleddau-cynhenid-cymru-caris/.
Os ydych chi’n byw yng Nghymru ac yn dymuno i CARIS gael eich gwybodaeth, cysylltwch â ni a byddwn yn hapus i’ch cynorthwyo. Gallwch optio allan ar unrhyw adeg.