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OOG Collaborative Study - Uveal Melanoma in Young Patients

October 2013:

https://www.surveymonkey.com/s/OOG_Young_Melanoma

 

Aims of the Study:

 

Many retrospective cohorts of UM in young patients have been reported with variable results and short follow-up, therefore we want to establish a collaborative, retrospective OOG study in order to analyses children diagnosed with choroidal and ciliary body melanoma, whom are younger than 18 years of age, by studying their tumour clinical characteristics, treatment out-come, and prognosis in this age group. We will compare these results with a control group which will includes patients whom their age is between 18-25 years of age.

 

Eligibility Criteria and Data Collection:

Based on discussions in the OOG, this study will enroll two group of patients were diagnosed with choroidal and ciliary body melanoma, excluding all patients with iris melanomas.

 

The first group will include all patients which are children and younger than 18 years of age, according to the definition of The European Medicines Agency and European Union of Pediatric in 2007 that, in the European Union (EU), children are defined as people from birth up to 18 years of age.       

The second group will include patients in the age range above 18 but younger than 25 years old, as this will be a control group for comparison with the first group, both groups, the study group and the control group are expected to be about equal in size.

 

The clinical data should include: Age, gender, tumour characteristics as location, height, largest basal diameter, intra ocular pressure, visual acuity at diagnosis and at last visit, pathology, genetic testing, presence of any predisposing factor as congenital ocular melanocytosis, or neurofibromatosis, treatment type whether surgical or irradiation, and survival status, staging the tumour according to the Tumour, Node, Metastasis classification the 7th Edition, and finally if the patient is alive or dead, beside was the death due to metastasis of UM or due to other cause. Any histopathological material can be re-analyzed and BAP1 status of survival patients determined in a second stage if not already done.

 

Analysis and Reporting:

 

This retrospective observational study will report summary data over all cases, the study aims to collect the data by October 2013, so that initial results can be reported and further plans made in the OOG meeting to be held in Nice, EVER 2013.

 

According to the OOG rules, no reports will be published without prior knowledge of all members who contributed data to the study. The sequence of authors will be as follows:


1- Dr. Rana’a Al-Jamal and Dr. Nathalie Cassoux are the first authors as they are the principal investigators.

2- Participating members will be listed in the order of the number of eligible cases submitted in all abstracts and manuscripts.

 

Update 15.10.2013:

 

 

Initial results and updates were reported at the OOG meeting, which was held in Nice, during the EVER 2013 congress. Fortunately there were new centers have agreed to join this study, therefore It was agreed to extend the deadline for data submission until the end of January 2014. After this deadline, we will complete the data analysis before the Krakow meeting in March 2014, also there will be a discussion during OOG business meeting in Krakow, before starting writing the manuscript.

Rana'a Al-Jamal

 

Instruction:

 

Intent to participate

Once the receipt of your intent to participate have been received you can enter the patient data through this survey website

Upon receiving this study proposal, please e-mail to the study coordinators:

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1. OOG Member name

2. OOG Member centre

3. Name of any co-investigator assigned to this study

 

 

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OOG Studies


July 2013


Dear OOG Member,


We would kindly like to alert you to the recently published OOG joint study on classification of uveal melanoma:

 

http://jco.ascopubs.org/content/early/2013/06/25/JCO.2012.45.2771.abstract


With regards,


Tero Kivelä and Emma Kujala

 

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