Anonymised Register V1.0 User Guide
Contents
1. every three months Itis also our intention to enhance this data over time and we would welcome any suggestions for improvement please send an email to informationsupport hfea gov uk Trim Ref 2010 02694 Page 3 Anonymised Register User V1 0 Guide 3 3 Data Quality The types of forms the information that we have collected and the method of data collection have changed over the years since the inception of the HFEA Up until 2006 information was returned to the HFEA on paper forms which were then keyed into the Register which led to transcription errors The forms that we used to collect information also changed several time so some of the data that we hold is not present across all the years of the Register The HFEA now runs rigorous data checking routines over the information received and requires clinics to correct any erroneous returns We also ensure that the information that we have a statutory obligation to maintain is correct from 1991 to date As such the end user of this anonymised register may encounter records that appear incongruous or impossible to reconcile Trim Ref 2010 02694 Page 4 Anonymised Register User V1 0 Guide 4 Using the Anonymised Register 4 1 gt Opening the data The anonymised register in this release 1 0 is supplied as character delimited data the delimiter used being the pipe character There are 20 files that make up the dataset 1991 HFEA AR V1 0 psv 2009 HFEA AR V2. 1 if the cause of infertility is due to partner sperm motility 0 otherwise 1 if the cause of infertility is due to partner sperm immunity 0 otherwise A comma separated list of the main reason for this cycle which can include Treatment Now Donation For Storing Eggs For Research 1 if this was a stimulated cycle 0 if not A comma separated list of the types of stimulation used If donor eggs were used the donor s age at registration banded as follows lt 20 21 25 26 30 31 35 If donor sperm was used the donor s age at registration banded as follows lt 20 21 25 26 30 31 35 36 40 41 45 gt 45 this cycle used a donated embryo 0 otherwise 1 if the patient was acting as a surrogate in this cycle 0 otherwise Either IVF or DI Page 7 Anonymised Register User V1 0 Guide Specific Treatment Type PGD Elective Single Embryo Transfer Egg Source Sperm From Fresh Cycle Frozen Cycle Eggs Thawed Fresh Eggs Collected Fresh Eggs Stored Total Eggs Mixed Eggs Mixed With Partner Sperm Eggs Mixed With Donor sperm Total Embryos Created Eggs Micro injected Embryos from Eggs Micro injected Total Embryos Thawed Embryos Transferred Embryos Transferred from Eggs Micro injected Embryos Stored For Use By Patient Embryos from Eggs Micro injected Stored For Use By Patient Date of Egg Collection Date of Egg Thawing Date of Egg Mixing Date of Embryo Thawing T
3. Cause of Infertility Partner Sperm Concentration Cause of Infertility Partner Sperm Morphology Cause of Infertility Partner Sperm Motility Cause of Infertility Partner Sperm Immunity Main Reason for Producing Embryos Storing Eggs Stimulation used of Ovulation Induction Egg Donor Age at Registration Sperm Donor Age at Registration Donated embryo Patient acting as Surrogate Treatment Type IVF or DI Trim Ref 2010 02694 Bit Bit Bit Bit Bit Bit Bit Bit Bit Bit Bit Bit Bit Text Bit Text Text Text Bit Bit Text 1 if the main cause of infertility is due to the patient partner problem 0 otherwise 1 if the secondary cause of infertility is due to the patient partner problem 0 otherwise 1 if the primary cause of infertility is tubal disease 0 otherwise 1 if the cause of infertility is Ovulatory disorder 0 otherwise 1 if the cause of infertility is a male factor 0 otherwise 1 if the cause of infertility is an unexplained patient factor 0 otherwise 1 if the cause of infertility is endometriosis 0 otherwise 1 if the cause of infertility is cervical factors 0 otherwise 1 if the cause of infertility is an unexplained female factor 0 otherwise 1 if the cause of infertility is due to partner sperm concentration 0 otherwise 1 if the cause of infertility is due to partner sperm morphology 0 otherwise
4. 1 0 psv And HFEA AR V1 0 psv The latter file contains information from all years of the Register and the others contain the same divided into more manageable annual chunks Instructions on how to import the information into any particular application is beyond the scope of this document 4 2 Using the Data This information covers cycles in the period 01 01 1991 to 31 03 2009 This dataset contains 87 fields of data across 835 000 rows of cycle data The content of each field is described in more detail in section Error eference source not found and is generally self explanatory Trim Ref 2010 02694 Page 5 Anonymised Register User V1 0 Guide 4 3 Data Types Number Numeric Value Bit Simple Yes No Type Text Alphanumeric data 4 4 Notes on Data Values Text Fields can include multiple pieces of information for example different types type of stimulation used in a cycle They can also include numerical data that has been split in to bands e g patient age at treatment The value NULL will also be seen frequently in fields This indicates that a value for this field has not been captured for the specific cycle 4 5 Data Dictionary Field Name Patient Age at Treatment Date patient started trying to become pregnant OR date of last Pregnancy Total Number of Previous IVF cycles Total number of previous pregnancies Total number of IVF pregnancies Total number of Previous live births natu
5. 40 weeks Comma separated list of the outcome of this pregnancy Page 9 Anonymised Register User V1 0 Guide Text Banded birthweight of this child Text The sex of this child M if male F if female Date The year this child was delivered 4th Foetal Heart Birth Weight 4th Foetal Heart Sex 4th Foetal Heart Delivery Date 4th Foetal Heart Birth Bit 1 if a congentital abnormailty was recorded 0 if not Congenital Abnormalities Trim Ref 2010 02694 Page 10
6. HUMAN FERTILISATION EMBRYOLOGY AUTHORITY Anonymised Register V1 0 User Guide 3 1 THE REGISTER 0 0ccccccecececcecececcececeececcueeceececaeccuecueeaeeceeeaueceesteeaeeeaees 3 2 DATA 2ccceccecececceceeeececcececeececeaucceccaeeceeceeeaeeceecaeeseeeaees a ces sae ee eee cen os oe ees eee USING THE ANONYMISED OPENING THE DAA 4 2 SING THE DATA erica alee a A teal TA DATA TYRE Saesnes E Lana 4 4 NOTES ON DATA VALUES oeusepeevpeuss 4 5 DATA DICTIONARY 0 c0ccceccecececceceeeececcucececceccaeeceecaeeceeceecaeeceeeteeaeeeerens Anonymised Register User V1 0 Guide 1 Modification History DATE MODIFICATION AUTHOR 2604 2010 David Trim Ref 2010 02694 Page 1 Anonymised Register User V1 0 Guide 2 Scope Document Audience Researchers Interested Parties Review Frequency ad hoc Trim Ref 2010 02694 Page 2 Anonymised Register User V1 0 Guide 3 Introduction 3 1 3 2 The Register Information about In Vitro Fertilisation IVF and Donor Insemination DI treatment in the UK has been collected by the HFEA since it was established 1 August 1991 Since that date clinics have been required by law to report details of the treatments they car
7. Text Text Date Bit Number Text The year in which this cycle took place 1 if there was 1 or more live births as a result of this cycle 0 if not The number of live births as a result of this cycle A comma separated list of the results of a patient scan If foetal sacs were present the scan the number of sacs that evidenced foetal pulsation The number of weeks of gestation for this foetal heart banded if less that 30 or greater than 40 weeks Comma separated list of the outcome of this pregnancy Banded birthweight of this child The sex of this child M if male F if female The year this child was delivered 1 if a congentital abnormailty was recorded 0 if not The number of weeks of gestation for this foetal heart banded if less that 30 or greater than 40 weeks Comma separated list of the outcome of this pregnancy Banded birthweight of this child The sex of this child M if male F if female The year this child was delivered 1 if a congentital abnormailty was recorded 0 if not The number of weeks of gestation for this foetal heart banded if less that 30 or greater than 40 weeks Comma separated list of the outcome of this pregnancy Banded birthweight of this child The sex of this child M if male F if female The year this child was delivered 1 if a congentital abnormailty was recorded 0 if not The number of weeks of gestation for this foetal heart banded if less that 30 or greater than
8. d by injecting sperm The number of embryos that were created in this cycle and then frozen for subsequent use by the patient The number of embryos that were created in this cycle by injecting sperm and then frozen for subsequent use by the patient eggs were collected NULL if no eggs were collected Page 8 Anonymised Register User V1 0 Guide Date of Embryo Transfer Year of Treatment Live Birth Occurrence Number of Live Births Early Outcome Treatment Cycle at Clinic Number of Foetal Sacs with Foetal Pulsation 1st Foetal Heart Weeks Gestation 1st Foetal Heart Birth Outcome 1st Foetal Heart Birth Weight 1st Foetal Heart Sex 1st Foetal Heart Delivery Date 1st Foetal Heart Birth Congenital Abnormalities 2nd Foetal Heart Weeks Gestation 2nd Foetal Heart Birth Outcome 2nd Foetal Heart Birth Weight 2nd Foetal Heart Sex 2n Foetal Heart Delivery Date 2nd Foetal Heart Birth Congenital Abnormalities 3rd Foetal Heart Weeks Gestation 3rd Foetal Heart Birth Outcome 3rd Foetal Heart Birth Weight 3rd Foetal Heart Sex 3rd Foetal Heart Delivery Date 3rd Foetal Heart Birth Congenital Abnormalities 4th Foetal Heart Weeks Gestation 4th Foetal Heart Birth Outcome Trim Ref 2010 02694 Number Date Bit Number Text Number Number Text Text Text Date Bit Number Text Text Text Date Bit Number Text
9. rally conceived or through IVF Type Infertility Female Primary Type of Infertility Female Secondary Type of Infertility Male Primary Type Infertility Male Secondary Trim Ref 2010 02694 Type Text Number Number Number Number Number Bit Bit Bit Bit Description This patient s age at treatment banded as follows 18 34 35 37 38 39 40 42 43 44 45 50 The number of years ago that patient started trying to become pregnant or years since last pregnancy How many cycles of IVF the patient has previously had How many time the patient has previously been pregnant How many times the patient has been pregnant through the use of IVF How many live births the patient has had 1 if the main cause of infertility is due to the patient 0 otherwise 1 if the secondary cause of infertility is due to the patient 0 otherwise 1 if the main cause of infertility is due to the partner 0 otherwise 1 if the secondary cause of infertility is due to the partner 0 otherwise Page 6 Anonymised Register User V1 0 Guide of Infertility Couple Primary of Infertility Couple Secondary Cause of Infertility Tubal disease Cause of Infertility Ovulatory Disorder Cause of Infertility Male Factor Cause of Infertility Patient Unexplained Cause of Infertility Endometriosis Cause of Infertility Cervical factors Cause of Infertility Female Factors
10. rim Ref 2010 02694 Text Bit Bit Text Text Bit Bit Number Number Number Number Number Number Number Number Number Number Number Number Number Number Number Number Number Number A comma separated list of specific treatment types used in this cycle see http Awww hfea gov uk glossary html for an explanation of the terms 1 if this cycle involved the use of preimplantation genetic diagnosis screening 0 if not 1 if this cycle involved the deliberate use of only one embryo Indicates whether the eggs used in this cycle came from the Patient or a donor Indicates whether the sperm used in this cycle came from the Patient Donor 1 if this cycle used fresh embryos 1 if this cycle used frozen embryos If this cycle used frozen eggs the number of eggs thawed The number of eggs collected in this cycle The number of eggs collected in this cycle and subsequently frozen The number of eggs mixed with sperm The number of eggs mixed with sperm from the partner The number of eggs mixed with sperm from a donor The total number of embryos created in this cycle The number of eggs that were injected with sperm e g By ICSI The number of embryos that developed from injected eggs If this was a frozen cycle the total number of embryos that were thawed The number of embryos transferred into the patient in this cycle The number of embryos transferred into the patient in this cycle that were create
11. ry out to the HFEA Consequently the HFEA maintains the largest database of infertility treatments in the world The information that we currently collect is detailed here http www hfea gov uk fertility clinic forms html Whilst these are examples of paper forms the actual data returned to us is made electronically using our Electronic Data Interchange EDI system and we currently process about a quarter of a million forms per year This information is then held on the HFEA Register However the original incarnation of the HFE Act made it impossible for the HFEA to share this information with anybody outside of the Authority Any analyses of the information we hold had to be made internally and for researchers et al Specific enquiries about Register data were answered through the Freedom of Information Act The legislation changed in October of 2009 to allow access to the Register for researchers about which more information be obtained here http www hfea gov uk 5447 html Anonymised Data The anonymised Register will we hope allow a broader audience to view analyse and interpret the information that we hold We have chosen what we feel is a useful subset of the Register and applied a broad range of techniques to ensure that none of the information contained is identifiable This is the initial release of the anonymised register and we will update the dataset in line with the publication of out Choose a Fertility Clinic data
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