Victorian Lung Cancer Registry (VLCR) (Australia) **

Database Contact Data

Victorian Lung Cancer Registy
Monash University 
553 St Kilda Road 
Melbourne, VIC 3004
AUSTRALIA
Email: med-vlcr@monash.edu

Alternate Contact

Associate Professor Robert Stirling
Coordinating Principal Investigator, Steering Committee Chairman
Victorian Lung Cancer Registry
Email: r.stirling@alfred.org.au

References of Studies Using/Describing Database

1. Tesema GA, Stirling RG, Wah W, Tessema ZT, Heritier S, Earnest A. Geographic variation in delay to surgical treatment among non-small cell lung cancer patients. Lung Cancer. 2025 Jan;199:108077. doi: 10.1016/j.lungcan.2024.108077. Epub 2025 Jan 4.

2. Tesema GA, Stirling RG, Tessema ZT, Heritier S, Earnest A. Patient- and Areal-Level Risk Factors Associated With Lung Cancer Mortality in Victoria, Australia: A Bayesian Spatial Survival Analysis. Cancer Med. 2024 Oct;13(19):e70293.

3. Tissera S, Billah B, Brand M, Karim MN, Antippa P, Blum R, Caldecott M, Conron M, Faisal W, Harden S, Olesen I, Parente P, Richardson G, Samuel E, See K, Underhill C, Wright G, Zalcberg J, Stirling RG. Stage-Specific Guideline Concordant Treatment Impacts on Survival in Nonsmall Cell Lung Cancer: A Novel Quality Indicator. Clin Lung Cancer. 2024 Aug 24:S1525-7304(24)00191-8.

4. Earnest A, Tesema GA, Stirling RG. Machine Learning Techniques to Predict Timeliness of Care among Lung Cancer Patients. Healthcare (Basel). 2023 Oct 18;11(20):2756.

5. Smith S, Sapkaroski D, Brand M, Tran A, Zalcberg 1. J, Stirling RG. Mapping the clinical care pathways for advanced stage non-small cell lung cancer patients in Victoria: A retrospective cohort study of supportive and palliative care. Nurs Health Sci. 2023 Sep;25(3):411-423.

6. Huang J, Faisal W, Brand M, Smith S, Alexander M, Briggs L, Conron M, Duffy M, John T, Langton D, Lesage J, MacManus M, Mitchell P, Olesen I, Parente P, Philip J, Samuel E, Torres J, Underhill CR, Zalcberg JR, Harden S, Stirling R. Patterns of care for people with small cell lung cancer in Victoria, 2011-19: a retrospective, population-based registry data study. Med J Aust. 2023 Aug 7;219(3):120-126.

7. Tesema GA, Tessema ZT, Heritier S, Stirling RG, Earnest A. A Systematic Review of Joint Spatial and Spatiotemporal Models in Health Research. Int J Environ Res Public Health. 2023 Mar 28;20(7):5295.

8. Woodford K, Koo K, Reynolds J, Stirling RG, Harden SV, Brand M, Senthi S. Persisting Gaps in Optimal Care of Stage III Non-small Cell Lung Cancer: An Australian Patterns of Care Analysis. Oncologist. 2023 Feb 8;28(2):e92-e102.

9. Stirling R, Evolution of the Victorian Lung Cancer Registry (VLCR): Results of longitudinal change in outcomes measures. 2023. Australian Lung Cancer Conference (Gold Coast).

10. Samuel E, Discordance between clinical and pathological staging of patients with operable non-small cell lung cancer: A retrospective observational cohort study. 2023. Australian Lung Cancer Conference (Gold Coast).

Jan 23, 2025: 500 Healthcare Database profiles, what a milestone!

With the upload of Swefoot (Swedish National Register for Foot and Ankle Surgery), we have reached a new milestone. Swefoot was started in 2014 to collect surgical and patient-reported data on foot and ankle surgery. Currently, data on 16 different diagnoses are collected in 68 units performing foot and ankle surgery. Registrations are performed by the surgeon and the patient. In January 2025, a total of 47,600 surgical procedures were registered in Swefoot.

Swefoot (Swedish National Register for Foot and Ankle Surgery) (Sweden)

Database Contact Data

Maria Cöster
Register Holder - Swefoot
SWEDEN
Email: maria.coster@akademiska.se

Alternate Contact

Center of Registers Västra Götaland
Email: registercentrum@vgregion.se

References of Studies Using/Describing Database

1. Söderpalm AC, Montgomery F, Helander KN, Cöster MC. Hallux valgus; An observational study on patient characteristics, surgical treatment and pre-operative HRQoL from the Swedish foot and ankle register (Swefoot). Foot (Edinb). 2023 Dec;57:102060.

2. Cöster MC, Osbeck I, Montgomery F, Cöster-Stoij ME. Baseline and 1-Year Follow-Up Data of Patients with End-Stage Hallux Rigidus Treated with an Arthrodesis Reported to Swefoot. Medical Research Archives. 2023 Jun 26;11(6).

3. Osbeck I, Cöster M, Montgomery F, Atroshi I. Surgically treated adult acquired flatfoot deformity: Register-based study of patient characteristics, health-related quality of life and type of surgery according to severity. Foot Ankle Surg. 2023 Jun;29(4):367-372.

4. Cöster MC, Bremander A, Nilsdotter A. Patient-reported outcome for 17,648 patients in 5 different Swedish orthopaedic quality registers before and 1 year after surgery: an observational study. Acta Orthop. 2023 Jan 23;94:1-7.

5. Cöster MC, Cöster A, Svensson F, Callréus M, Montgomery F. Swefoot - The Swedish national quality register for foot and ankle surgery. Foot Ankle Surg. 2022 Dec;28(8):1404-1410.

6. Cöster MC, Cöster ME, Montgomery F. Hallux rigidus - Osteoarthritis of the first MTP-joint. Surgical and patient-reported results from Swefoot. Foot Ankle Surg. 2021 Jul;27(5):555-558.

7. Cöster ME, Montgomery F, Cöster MC. Patient-reported outcomes of joint-preserving surgery for moderate hallux rigidus: a 1-year follow-up of 296 patients from Swefoot. Acta Orthop. 2021 Feb;92(1):109-113.

Jan 16, 2025: Our first profile of 2025: The Belgian Cystic Fibrosis Registry

There are at least 1,400 people living with Cystic Fibrosis (CF) in Belgium, and the Belgian Cystic Fibrosis Registry (started in 1998) covers about 90-95% of CF patients living in Belgium. By collecting data on almost all patients with CF cared for in Belgium, the BCFR gives a good and quite complete picture of the epidemiology of the disease and the evolution of the health status of CF patients.

Belgian Cystic Fibrosis Registry (Belgium) **

Database Contact Data

Geraldine Daneau
Sciensano
Rue Juliette Wytsmanstraat 14
1050 Brussels
BELGIUM
Email: Geraldine.Daneau@sciensano.be

Alternate Contact

You may also contact the registry via this page - https://www.sciensano.be/en/about-sciensano/contact-sciensano

References of Studies Using/Describing Database

1. Lebecque P, Bauraind O, Thimmesch M. Mucoviscidose : un regard sur la situation en Belgique en 2022 [Cystic fibrosis - A look at Belgium in 2022]. Rev Med Liege. 2022 Sep;77(9):532-537. French.

2. Olesen HV, Drevinek P, Gulmans VA, Hatziagorou E, Jung A, Mei-Zahav M, Stojnic N, Thomas M, Zolin A; ECFSPR Steering Group. Cystic fibrosis related diabetes in Europe: Prevalence, risk factors and outcome; Olesen et al. J Cyst Fibros. 2020 Mar;19(2):321-327.

3. Boboli H, Boemer F, Mastouri M, Seghaye MC. Dépistage néonatal de la mucoviscidose : vers une implémentation nationale en Belgique en 2019 [Neonatal screening for cystic fibrosis : towards a national implementation in Belgium in 2019]. Rev Med Liege. 2018 Oct;73(10):497-501. French.

4. Libeert D, Declercq D, Wanyama S, Thomas M, Van Daele S, De Baets F, Van Biervliet S. The effect of enteral tube feeding in cystic fibrosis: A registry based study. J Cyst Fibros. 2018 Mar;17(2):264-270. 

5. De Wachter E, Thomas M, Wanyama SS, Seneca S, Malfroot A. What can the CF registry tell us about rare CFTR-mutations? A Belgian study. Orphanet J Rare Dis. 2017 Aug 22;12(1):142.

6. De Boeck K, Munck A, de Monestrol I, Gulmans V, Lemonnier L, Middleton PG, Wanyama S, Thomas M. Does newborn screening influence the young cystic fibrosis cohort included in national registries? Eur Respir J. 2017 Jan 11;49(1):1600686.

7. Dewulf J, Vermeulen F, Wanyama S, Thomas M, Proesmans M, Dupont L, De Boeck K. Treatment burden in patients with at least one class IV or V CFTR mutation. Pediatr Pulmonol. 2015 Dec;50(12):1230-6.

8. Thomas M, Lemonnier L, Gulmans V, Naehrlich L, Vermeulen F, Cuppens H, Castellani C, Norek A, De Boeck K. Is there evidence for correct diagnosis in cystic fibrosis registries? J Cyst Fibros. 2014 May;13(3):275-80.

9. De Boeck K, Vermeulen F, Wanyama S, Thomas M; members of the Belgian CF Registry. Inhaled corticosteroids and lower lung function decline in young children with cystic fibrosis. Eur Respir J. 2011 May;37(5):1091-5. 

10. Leal T, Reychler G, Mailleux P, Gigi J, Godding V, Lebecque P. A specific database for providing local and national level of integration of clinical data in cystic fibrosis. J Cyst Fibros. 2007 May;6(3):187-93.

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