Bruinsma et al. BMC Public Health 2011, 11(Suppl 5):S7 http://www.biomedcentral.com/1471-2458/11/S5/S7 Trobe University who were interested in the research and had significant experience in conducting long-term follow-up studies in women’s health met with treating clinicians. Following an agreement for the need for a study and for formal collaboration, a period of intense discussion and consultation was undertaken with all parties to formulate the study design and research ques- tions. Given their investment in the project and the sense of disenfranchisement that many treated tall girls felt from the original decision-making, Tall Girls Inc. and particularly the president, Janet Cregan-Wood, were involved from inception in the study design process. In 2000, the National Health and Medical Research Coun- cil (NHMRC) provided funding for the study (known as the Tall Girls Study). Study design The study was, by necessity, designed as a retrospective cohort study. Ideally, the cohort would be comprised of all Australian women assessed for tall stature. However, the number of women who were assessed and/or treated in Australia was not known. What was known was that the private practice of one paediatric endocrinologist comprised a high proportion of treated tall girls. Meti- culous records had been kept and the specialist was will- ing to make them available for the study. In addition, a large number of women had been assessed for treatment as adolescents but their estimated adult height did not warrant treatment or their parents elected not to have the treatment. All treated and untreated (assessed only) women were considered eligible to participate and the inclusion of untreated women provided an important comparison group of tall women who had been through similar referral pathways. To ensure the most complete coverage possible, a number of direct and indirect strategies were used to maximise recruitment. These included having access to the private medical records of the main treating clini- cian so we could trace women through public records and invite them to participate in the study; having access to the mailing list of Tall Girls Inc. so we could invite women directly; advertising the study through the mailing list of a tall women’s clothing company; inviting other paediatric endocrinologists who may have treated tall girls to participate; and advertising through profes- sional medical, nursing and ancillary associations. Some tall girls were referred for a height assessment by doc- tors and nurses undertaking yearly health checks in pri- vate girls’ schools and so information about the study was placed in alumni newsletters of these schools. While these strategies increased the opportunity for women to self-refer into the study, reliance on self-refer- ral as the only recruitment method would have resulted in a study sample that was too small and findings prone Page 3 of 8 to selection bias [43] if volunteers over-represented women reporting adverse outcomes. A cohort of 1,432 eligible subjects was identified: 1,248 from medical records (1,222 of these from one paediatric endocrinologist) and 184 from self-referrals. 572 women in the cohort were treated and 860 women were untreated. A total of 1243 (90% of treated and 84% of untreated) were traced and invited to participate in the study: of these, 398 treated and 448 untreated women agreed and completed a postal questionnaire. Women were also invited to complete a computer assisted telephone interview (CATI) which collected information on reproductive history and a measure of mental health measure; 371 treated women (72% of those traced) and 409 (56%) untreated women com- pleted this. Written consent to abstract data from medi- cal records was provided by 93% (n=726) of women who completed the interview. However, medical records were available for only 618 (75% of treated and 95% of untreated). The mean age of participants was 39·8 years (range 20-55) in the treated group and 37·7 years (range 23-54) in the untreated group. Treated and untreated partici- pants were similar in their marital status and highest level of education achieved. Self-reported current height was greater in treated women (mean 179·0cm, SD 4·0cm) than in untreated women (mean 176·8cm, SD 4·9cm). Similarly, the first recorded estimated mature height was greater in the treated women (mean 181·5cm, SD 6·3cm) than in the untreated (mean 174·3cm, SD 4·6cm). The issues that we encountered in assembling a cohort were very similar (on a smaller scale) to those encountered by researchers aiming to investigate the health outcomes for women and their offspring who were administered diethylstilbestrol (DES) during preg- nancy or were exposed in-utero [44], in that it was impossible to enumerate the total exposed cohort, accessing medical records posed a number of challenges and it was difficult to trace women over a long period of time. Clinical collaboration In Australia, the medical records of private medical practitioners are the property of the medical practi- tioner, not the individual to whom the record refers. Under both the Privacy Act 1988 (Commonwealth) and the Health Records Act 2001 (Victoria), records cannot be divulged to a third party without the individual’s con- sent, although there are some exemptions, one of which is where the research is in the public interest. It is a well accepted practice that health providers will contact patients on behalf of researchers to invite them to parti- cipate in relevant research. If the individual agrees,