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RESEARCH DATABASE

Annual Report to Research Ethics Committee

Research databases with approval from a Research Ethics Committee are required to provide the REC with an annual report on their activities. This form sets out the minimum content of the report and a template format, which may be adapted appropriately.

1. Details of the research database manager (“Data Controller”)

Name: Prof. S Faisal Ahmed

Address: Child HealthSchool of MedicineOffice Block Level 0 Zone 1 (Paediatrics)Queen Elizabeth University Hospital CampusGovan Road, Glasgow G51 4TF

Telephone: +44-141-451-5841

E-mail: [email protected]

2. Details of the Database

Title: The I-DSD Registry

Establishment responsible for management of the database:

University of Glasgow, National E-Science Centre

Data Custodian

This should be a senior individual, not part of the research database team, who is responsible for oversight of the database within the establishment.

Prof S. Faisal Ahmed

Main REC: WoSRES

REC reference number: 14/WS/1050

Research database annual report form (version 1.0, March 2012)

National Research Ethics Service

3. Summary of activity for [October 2015 – September 2016]

Please provide an overall summary of the database’s activities during the year, including:

Data collection Use /release of data Collaborations with other databases /programmes Engagement with patients/service users and publicity Any significant developments in the database’s scope, operation or governance.

Background and ObjectivesEffective clinical care and research in Disorders of Sex Development (DSD), as well as assessment of long-term outcome of these rare conditions, requires multicentre collaboration across national boundaries and across multiple clinical and research disciplines. Between 2008 and 2011, the DSD Registry was at the heart of the EuroDSD collaboration for supporting the sharing of data. Since 2011 the Registry has been supported through MRC as the International DSD Registry which adheres to the highest standards of data governance and security.

Data CollectionSince the last report (October 2015), 473 cases have been added to the registry. The current Registry metrics are as follows:In August 2016, there were 2347 cases added by registered users from 59 centres in 27 countries across 5 continents. A further 87 centres and 23 countries have registered as users (without cases) covering all 6 habitable continents. The age of presentation ranges from <1 month to 53 years, with a median age of presentation of 1-3 months. The median year of birth is 2000 (range 1927-2016). The commonest disorder type is Congenital Adrenal Hyperplasia (including disorders of androgen excess (730) followed by disorders of androgen action (497). The majority of cases had a 46XY karyotype (1533), followed by a 46XX karyotype (561). Around 51% (1209) cases in the Registry have a female sex and 48% (1135) have a male sex – 1% (20) was not assigned. There are 46 males with 46XX karyotype and 589 females with 46XY karyotype in the Registry. Associated malformations were present in 19% (453) cases. In addition to clinical data, biological samples are available in 27% (634) cases. The Registry continues to undergo development with the CAH visits longitudinal module supporting at least two prospective studies.

Use /release of dataUse of the Registry for research has always been encouraged. A new protocol has been established for access to data for Research Studies. This involves submission of a data search request to the project management team for approval of the Steering Committee. Data is then released to the researcher. A list of approved Research Studies is given below.

Collaborations with other databases /programmesThe I-CAH Registry has been launched and is hosted by I-DSD.

Engagement with patients/service users and publicityThere is now provision to allow access by a patient or their parent or guardian to a portion of their own record on the registry. This is done through the doctor at the clinical centre where they were recruited. In addition to their clinical data, the patient (participant) is provided with access to information about their centre and resources.At the I-DSD symposium (June 2015) a forum was provided for patient and parent support groups lead by Ellie Magritte (dsdfamilies.org). Additionally through COST DSDnet Working


Group 4, a patient/support group workshop, led by Joanne Hall (CAH-UK) is planned in October 2016 to ascertain patient/parent perspectives on the registry.Publicity for the registry has been via 6 newsletters produce biannually, all available to download from the website.

Any significant developments in the database’s scope, operation or governance.The database structure for capturing patient data was changed into a modular system (version 3.0). The data being collected is essentially the same, however only the core information and diagnosis data are mandatory. The other modules (Clinical History & Biomaterials, Assessments and Gene Analysis) are optional. A module specifically for capturing CAH data is now live and operational. A CAH longitudinal module designed to support a pharmaceutical study has been launched. Other modules in development are as Surgical Anatomical, Biochemistry and Transition.All aspects of the I-DSD and I-CAH registry development are overseen and governed by the Steering Committee.

4. Applications for access to data

Please append a listing of applications made to the database for release of, or access to, data during the reporting period, together with a lay summary of the purpose of each approved project. Include any releases authorised following a further project-specific application to a REC, as well as those authorised under generic approval.

5. Declaration

Signature of database manager:

Date of submission: 29/09/16


Applications for release of data

Please also provide a lay summary (maximum 200 words) for each project for which release of data was approved. Include both projects conducted within the research database team and by external researchers. Where further project-specific approval was given by a REC, please include the REC Reference Number in the additional comments.

Application to access the Registry Data for Research

Formal Applications (completed questionnaires)Study title Investigator Sponsor Funding Start End Date of

submission

Status Public Summary (For I-DSD Website, 50 words)

A Web-Based Platform For Patient Reported Outcome Research In CAH (PRO-CAH)

S. Faisal Ahmed, Jillian BryceRichard Ross, John Porter

Collaborators: CAH user group

University of Glasgow & University of Sheffield

Diurnal Ltd

2016 2019 10 June 2016

In set up (22/8/16)

PRO-CAH is an collaboration of users of the I-CAH registry to monitor patient reported outcome with an overall aim to improve the clinical care and increase research activities in the field of CAH.This will be achieved by developing and maintaining an international network of clinicians looking after people with CAH – the CAH User Group. As well as reporting to the user group at regular intervals, a key objective is to develop a new module to assess the quality of life and patient reported outcomes of people with CAH.

Evaluation of Islamic Perspectives Regarding a Medical Condition Known as Disorders of Sex

Taqwa binti Zabidi

University of Wales Trinity Saint David

Govt of Malaysia

2016 2016 25-Apr-16 Active (29/8/16)

Disorders of Sex Development has resemblance characteristics with a condition known in Islam as khunthā. Two types of khunthā, discernible and intractable khunthā have been defined by the classical Muslim jurists along with the method of gender assignment. Therefore, it is important to study these conditions from both, medical and Islamic perspectives, as a guideline for Muslim communities who are facing DSD condition.


DevelopmentPhenotypic predictors of AR mutation in suspected PAIS

Mariam Kourime

Collaborators: PMH?

University of Glasgow & Kiel?

ESPE? 2016 2016?

16/06/2016

Active (16/6/16)

A New International Registry Highlights The Differences In Practice For Reaching A Diagnosis Of CAH

Mariam Kourime

Collaborators: I-CAH user group

University of Glasgow

ESPE? 2016 2016 21/06/2016

Active (25/1/16)

After the creation of the international CAH Registry in October2014, using the same platform as the IDSD Registry, there has been a quick adoption of this new registry demonstrating the user acceptability. The study revealed also the temporal shift in diagnosis practice in CAH towards the use of molecular genetics.

Management of Fludrocortisone and salt therapy in 0-3 year old children with congenital adrenal hyperplasia (CAH)

Claahsen, Hedi, Neumann, Uta,

Collaborators: Blankenstein, Oliver, Krone, Nils, Nordenstrom, Anna

Radboudumc Amalia Children's Hospital Charite University Berlin

none 2015 2016 20/11/2015

Active (11/11/15)

Nowadays nearly all neonates with classic forms of congenital adrenal hyperplasia (CAH) are detected within the neonatal screening program before severe salt wasting crisis can occur. It is generally accepted that all infants with classic CAH are treated with hydrocortisone as well as fludrocortisone at diagnosis in the newborn period. However, there are no evidence based guidelines how to treat young infants especially with respect to salt and mineralocorticoid treatment.

Frequency of adrenal crisis, hypoglycaemia and seizures in relation to treatment and disease control in patients with CAH based on I-CAH registry

Ross, Richard, Karunasena, Nayananjani, Bonfig, Walter & Mohnike, Klaus

Collaborators: Oliver Blankenstein

University of Sheffield, Munich Technical University, University of Magdeberg

none 2015 2016 28/10/2015

Active (11/11/15)

CAH is a condition associated with adrenal crisis which could be life threatening. Some patients could experience even hypoglycaemia and seizures. These could be prevented by strict adherence to sick day rules. Aims of this study are to identify the prevalence of adrenal crisis and sick day episodes in relation to treatment and identify the prevalence of hypoglycaemia and seizures.


(Berlin), Hedi Claahsen van der Grinten (Nijmegen)

Androgen Receptor Deficiency in Rare Genitourinary Anomalies

Fahmy, Mohamed A Baky

Al Azher University, Cairo

looking for a sponsor

2015 2015 29/04/2015

approached

Detection of androgen rectors in different genitourinary anomalies and its impaction in management.

Birth weight in Different Etiologies of DSD

Poyrazoglu, Sukran & Darendeliler Feyza

Istanbul University

none 2015 2015 19/02/2015

Active (23/02/15)

Boys are always heavier than girls at birth. It is thought to originate from the Y chromosome and androjens. Although some studies showed that it is dependent of androjens, other did not. The aim of this study was to determine birth weight of term children in different etiologies of DSD.

45,X/46,XY mosaicism and its long-term effects

Lindhardt Johansen, Marie & Juuls, Anders

Copenhagen University Hospital, Denmark

Copenhagen University Hospital Research Funds

2015 2015 08/06/2015

Active (3/6/15)

Our study will focus on long-term outcomes in terms of growth, sex development adn fertility in male patients with 45,X/46,XY mosaicism and its variants.

Evaluation of Puberty in Females with Partial Androgen Insensitivity Syndrome(PAIS).

Guaragna Filho, G (Guerra-Junior G, Quigley C, Bryce J, Ahmed F, Magritte E)

State University of Campinas, Brazil. Indiana University Health, USA

not yet defined (to apply)

2014 2015 24/2/14 Active (24/12/14)

Disorders of sex development (DSD) include a large group of conditions whose primary manifestation is atypical development of the external genitalia. One concern that arises in clinical care of individuals with DSDs, especially those which gonads remain in situ, is the nature of their pubertal development, particularly whether this will be consistent with, or divergent from, the gender of rearing. In the case of the partial androgen insensitivity syndrome (PAIS), little information is available in literature. The aim of this project is to assess the timing and nature of pubertal development in individuals with


PAIS reared as female.Children with language, reading and communication problems

Bishop D, Atkins L

University of Oxford

Wellcome Trust

2014 2016 25/06/2014

Active (1/7/14)

The University of Oxford are looking for children aged 5-16 years old with a sex chromosome trisomy who live in the UK (47 XXX, XXY, XYY) to take part in a research study. Our research is looking at why some children have difficulties with learning to talk, understand or read.

Exome sequencing of DSD

McElreavy, K Institut Pasteur

various sources for exome sequencing on DSD – EU FP7, Institut Pasteur, Paris Health Service, Agence de Biomedicine.

2014 2017 18/03/2014

last registry access Nov 2014

The genetic causes of DSD are poorly understood. We aim to identify the genetic mutations that result in DSD through an unbaised approach of sequencing all of the genes in the human genome. This will help us to understand the changes in biological processes that occur in DSD.http://www.pasteur.fr/ip/easysite/pasteur/en/research/scientific-departments/developmental-e-stem-cells-biology/units-and-groups/human-developmental-genetics/index

Prevalence and epidemiology of CAH in I-DSD registry

Karunasena, Nayananjani & Ross, Richard

University of Sheffield

University of Sheffield

2014 2015 29/07/2014

Active (14/8/14)

Congenital adrenal hyperplasia is the commonest genetic endocrine disorder and this study will focus on understanding the prevalence of the condition in the registry.


DSDnet: WG4 An International Survey of Specialist Care for DSD

Kyriakou, Andreas


DSDnet 2014 2017 09/06/2015

Active (5/9/14)

An international survey of centres that deliver specialist care for children with DSD. The survey aims to explore the current models of clinical practice and professional development, the areas of future service development and the current models of communication between clinicians, families and peer support groups in specialist DSD centres.

dsd-Life Koehler, B University Charité

EU FP7 2013 2016 15/09/2012

In set up (Oct 2016)

dsd-Life is a European study evaluating the long-term effects of off-label therapies and psychological interventions in the different genetic conditions included in the medical DSD classification. Different areas of high importance for long-term well-being will be evaluated: quality of life and psychological well-being, health, patients' view and ethics. In addition to the study centres, the I-DSD Registry will be used for recruiting eligible patients and centres.

Outcome of preserved gonads in adults with androgen insensitivity syndrome

Cools, M Ghent University Hospital

Flanders Research Foundation

2013 2018 19/12/2012

Active (3/4/14)

Many men and women with androgen insensitivity syndrome (AIS) decline gonadectomy. Little is known about germ cell cancer risk in adults with AIS. We aim to document epidemiological data on the prevalence of retained gonads in AIS adults throughout Europe and beyond and estimate the prevalence of germ cell cancer by means of a survey among I-DSD registry users and by immunohistochemical studies on relevant patient material.

Improving Long-Term Outcomes in Congenital Adrenal Hyperplasia'

Krone, N University of Birmingham

Seeking adoption by BSPED

2013 2020 10/09/2012

Active (Sept 2015)

Congenital adrenal hyperplasia (CAH) ranks as one of the commonest inborn metabolic and endocrine conditions. A multitude of aspects in CAH care delivery lack a strong evidence base, partly due to small patient numbers in published studies. In addition, recent data on adult CAH patients suggest a suboptimal outcome and a loss of patients in tertiary care during the phase of transition into adult care. Similarly to other complex conditions with long-term health implications such as type 1 diabetes a better quality control of care and the possibility to establish multicentre studies with meaningful


patient numbers are warranted to improve the care of CAH patients. This project aims establish a nationwide UK registry for CAH employing the I-DSD registry platform and study the current practice against UK DSD guidance and ESPE/LWPES DSD and CAH guidelines.

Novel mechanisms in adrenal and reproductive biology

Achermann, J Great Ormond Street Hospital

The Wellcome Trust

2005 2017 14/09/2012

(last registry access Nov 2012)

Our research aims to improve the diagnosis of new and established conditions that can affect gonad development and function. We are trying to work out how reaching a specific diagnosis might improve management pathways for individuals and families. Finally, we are developing resources and information related to steroidogenic factor-1 and addressing how best to follow up individuals with SF-1-associated conditions.

Completed StudiesOutcome in PAIS Lucas-Herald, A NHS GGC n/a 2014 2015 02/12/20

13Completed

This study will review the Registry to obtain information regarding patients with PAIS born from 1997-2003 to determine the outcomes and clinical characteristics of these patients.ReportPAIS is a rare condition caused by defects in the androgen receptor gene. To date there is limited information regarding the outcomes for affected men. The I-DSD Registry offers the opportunity for collaborative research internationally regarding conditions such as PAIS. Further information regarding outcomes for patients with PAIS will aid future management of such individuals

I-DSD registry evaluation and case analysis (MSc)

Dimovasili, C University of Glasgow

none 2012 2012 11/06/2012

Completed

same


Associated anomalies in DSD

Cox, K University of Glasgow

Yorkhill Children's Foundation

2012 2014 04/02/2013

Completed

same

Trends in Sex Assignment

Kolesinska, Z University of Glasgow

ESPE Visiting Fellowship

2012 2013 05/02/2013

Completed

In all three groups of cases diagnosed with partial androgen insensitivity syndrome, disorder of androgen synthesis and disorder of gonadal development there was a significant difference in the initial EMS between the group raised as boys and the group raised as girls.

Rare Disease Registries - Perception Of Parents & Young People

Jayasena A, Muscarella M, Ahmed F


Fellowship funding (AJ and MM)?

2013 2013 12/03/2014

Completed

To understand the views of parents and young people about rare-disease registries; a questionnaire was completed by two groups, those who were participating in the I-DSD Registry and who had a rare condition other than DSD. Both groups have positive outlook on rare-disease registries and are keen to access more information.

Current Registered Users of the Registry (all approved)

Name Country Centre Date joining Role DatasetJillian Bryce United Kingdom Glasgow RHC 2011-12-20 13:30 ROLE_AUDITOR All dataJipu Jiang United Kingdom Glasgow RHC 2008-12 ROLE_ADMIN All dataJohn Achermann United Kingdom London UCL 2010-12-14 18:09 ROLE_CONTRIBUTOR Own dataAdela Chirita-Emandi Romania Timisoara 2013-07-02 08:56 ROLE_CONTRIBUTOR Own dataAlicia Diaz-thomas USA Memphis 2014-07-23 23:02 ROLE_CONTRIBUTOR Own dataAnnastasia Ediati Indonesia Semarang 2013-06-08 06:26 ROLE_CONTRIBUTOR Own dataAfsanehfarkhondi Iran Urmia 2015-05-14 17:13 ROLE_CONTRIBUTOR Own dataTomas Ahern United Kingdom Manchester - Christie 2016-02-12 11:05 ROLE_CONTRIBUTOR Own data


NHS FTAnders Juul Denmark Copenhagen 2013-10-13 19:06 ROLE_CONTRIBUTOR Own dataAlexander Springer Austria Vienna 2013-06-06 12:44 ROLE_CONTRIBUTOR Own dataMalika Alimussina Kazakhstan Astana 2015-03-08 21:07 ROLE_CONTRIBUTOR Own dataCamelia Alkhzouz Romania Cluj-Napoca 2014-12-17 17:10 ROLE_CONTRIBUTOR Own dataAmany Ibrahim Egypt Cairo University 2015-06-22 11:48 ROLE_CONTRIBUTOR Own dataAmos Neheman Israel Kfar-Saba 2014-07-31 15:25 ROLE_CONTRIBUTOR Own dataAmaya Rodriguez Estevez

Spain Barakaldo 2016-04-26 07:28 ROLE_CONTRIBUTOR Own data

Aneta Gawlik Poland Katowice 2013-01-31 00:24 ROLE_CONTRIBUTOR Own dataAngela Lucas-Herald United Kingdom Glasgow RHC 2013-12-02 16:04 ROLE_CONTRIBUTOR Own data

Anna Lauber-Biason Switzerland Fribourg 2014-02-10 10:14 ROLE_CONTRIBUTOR Own dataAnnelieke Van Der Linde

Netherlands Nijmegen 2016-01-21 21:23 ROLE_CONTRIBUTOR Own data

Ann Povall United Kingdom Liverpool Alder Hey 2013-08-23 09:21 ROLE_CONTRIBUTOR Own dataAnna Nordenstrom Sweden Stockholm 2010-09-20 19:23 ROLE_CONTRIBUTOR Own dataArianne Beda Dessens Netherlands Rotterdam 2014-06-20 11:04 ROLE_CONTRIBUTOR Own dataNavoda Atapattu Sri Lanka Colombo 2012-03-08 17:07 ROLE_CONTRIBUTOR Own dataAnnemarie Verijn Stuart

Netherlands Utrecht 2015-08-05 18:50 ROLE_CONTRIBUTOR Own data

Anne Wæhre Norway Oslo 2016-04-28 13:19 ROLE_CONTRIBUTOR Own data

AYLA Guven Turkey Istanbul Goztepe 2015-11-14 12:58 ROLE_CONTRIBUTOR Own dataAntonio Balsamo Italy Bologna 2010-11-02 18:10 ROLE_CONTRIBUTOR Own dataBarbara S Wardhaugh United Kingdom Edinburgh 2013-02-20 15:59 ROLE_CONTRIBUTOR Own dataBen Field United Kingdom Surrey & Sussex

Healthcare NHS Trust2015-08-14 17:33 ROLE_CONTRIBUTOR Own data

Berenice B Mendonca Brazil Sao Paulo 2012-05-25 16:50 ROLE_CONTRIBUTOR Own data

Bip Nandi Malawi Blantyre 2014-05-07 22:59 ROLE_CONTRIBUTOR Own dataAntonia Brooke United Kingdom Royal Devon & Exeter

NHS Trust2015-12-17 11:07 ROLE_CONTRIBUTOR Own data


Dr Carlo Acerini United Kingdom Cambridge 2013-05-15 14:42 ROLE_CONTRIBUTOR Own dataCarolin Sack Germany Luebeck 2016-01-26 09:16 ROLE_CONTRIBUTOR Own dataClarissa Gutierrez Carvalho

Brazil Porto Alegre 2015-07-15 20:08 ROLE_CONTRIBUTOR Own data

Jean Pierre Chanoine Canada Vancouver 2012-03-12 19:37 ROLE_CONTRIBUTOR Own dataPierre Chatelain France Lyon 2010-11-17 07:41 ROLE_CONTRIBUTOR Own dataTim Cheetham United Kingdom Newcastle 2015-11-12 12:34 ROLE_CONTRIBUTOR Own dataWee Yan Chia Malaysia Kuala Lumpur 2013-05-16 05:59 ROLE_CONTRIBUTOR Own dataHedi L. Claahsen - Van Der Grinten

Netherlands Nijmegen 2013-09-28 08:12 ROLE_CONTRIBUTOR Own data

Clinical Test United Kingdom Glasgow RHC 2015-09-04 12:22 ROLE_CONTRIBUTOR Own data

Colin Perry United Kingdom Glasgow QEUH 2016-05-18 13:58 ROLE_CONTRIBUTOR Own dataKara Connelly USA Portland 2013-10-29 19:04 ROLE_CONTRIBUTOR Own dataLichiardopol Corina Romania Craiova 2015-05-27 14:32 ROLE_CONTRIBUTOR Own dataElizabeth Crowne United Kingdom Bristol 2013-11-06 14:59 ROLE_CONTRIBUTOR Own dataNaomi Weintrob Israel Tel Aviv 2012-05-29 13:19 ROLE_CONTRIBUTOR Own dataEleni Daniel United Kingdom Sheffield Hallamshire 2014-10 ROLE_CONTRIBUTOR Own dataLi Dejun China Jilin 2012-11-03 05:57 ROLE_CONTRIBUTOR Own dataMona Mamdouh Hassan Egypt Cairo University 2015-04-18 10:33 ROLE_CONTRIBUTOR Own dataFriederike Denzer Germany Ulm 2014-05-30 09:20 ROLE_CONTRIBUTOR Own dataAn Desloovere Belgium Ghent 2010-04-22 08:48 ROLE_CONTRIBUTOR Own dataVioleta Iotova Bulgaria Varna 2016-01-18 11:19 ROLE_CONTRIBUTOR Own dataElena Bennecke Germany Berlin 2013-04-08 13:21 ROLE_CONTRIBUTOR Own dataDaniel Konrad Switzerland Zurich 2013-05-03 23:43 ROLE_CONTRIBUTOR Own dataLallemand, Dagmar Switzerland St Gallen 2014-01-20 20:31 ROLE_CONTRIBUTOR Own dataUlla Doehnert Germany Luebeck 2010-01-15 14:43 ROLE_CONTRIBUTOR Own dataJuan Diego Farias Cortés

Mexico Zapopan 2013-08-12 20:03 ROLE_CONTRIBUTOR Own data

Muhammad Irfan Munir Pakistan Faisalabad 2015-04-16 08:59 ROLE_CONTRIBUTOR Own dataDavid Rodriguez USA Houston 2015-03-10 22:23 ROLE_CONTRIBUTOR Own data


BuriticaDavid Sandberg USA Michigan 2012-05-01 15:31 ROLE_CONTRIBUTOR Own dataVictor Mendoza Colombia Santander 2014-02-12 23:53 ROLE_CONTRIBUTOR Own dataKrishna Murthy United Arab

EmiratesDubai 2013-06-06 06:36 ROLE_CONTRIBUTOR Own data

Emma Webb United Kingdom Birmingham Children's Hospital

2014-08-14 15:15 ROLE_CONTRIBUTOR Own data

Elizabeth Baranowski United Kingdom Birmingham University 2016-06-17 17:07 ROLE_CONTRIBUTOR Own dataEduardo Correa Costa Brazil Porto Alegre 2015-04-27 23:12 ROLE_CONTRIBUTOR Own dataElfride De Baere Belgium Ghent 2014-05-28 21:32 ROLE_CONTRIBUTOR Own dataEvelien F Gevers United Kingdom London Barts Health 2013-09-15 22:41 ROLE_CONTRIBUTOR Own dataEkaterine Kvaratskhelia Georgia Tbilisi 2014-03-07 12:47 ROLE_CONTRIBUTOR Own dataMAN Elim Hong Kong Hong Kong Queen Mary

Hospital2015-04-18 08:56 ROLE_CONTRIBUTOR Own data

Ellen Maris Belgium Ghent 2014-04-01 20:18 ROLE_CONTRIBUTOR Own dataEndocrine Research United Kingdom Manchester - Christie

NHS FT2016-02-08 09:15 ROLE_CONTRIBUTOR Own data

Erika Figueiredo Gomes Brazil Belo Horizonte 2015-03-17 21:48 ROLE_CONTRIBUTOR Own dataEvelyn Thomson United Kingdom Newcastle 2015-11-12 12:34 ROLE_CONTRIBUTOR Own dataEdiz Yesilkaya Turkey Ankara 2013-12-07 14:43 ROLE_CONTRIBUTOR Own data

Foued ABDELAZIZ Algeria Guelma 2013-02-19 20:31 ROLE_CONTRIBUTOR Own dataFeyza Darendeliler Turkey Istanbul University 2010-07-22 17:44 ROLE_CONTRIBUTOR Own dataFiliz Mine Cizmecioglu Turkey Kocaeli 2015-02-06 10:51 ROLE_CONTRIBUTOR Own dataFarida Jennane Morocco Casablanca 2010-04 ROLE_CONTRIBUTOR Own dataChrista E. Flueck Switzerland Bern 2012-10-13 11:08 ROLE_CONTRIBUTOR Own dataFranziska Phan-Hug Switzerland Lausanne 2014-03-01 17:16 ROLE_CONTRIBUTOR Own dataFrancesca Moscuzza Italy Pisa 2015-06-22 10:42 ROLE_CONTRIBUTOR Own dataPetra Frank Herrmann Germany Heidelberg 2015-03-16 12:06 ROLE_CONTRIBUTOR Own dataClaire-lise Gay France Lyon 2009-04 ROLE_CONTRIBUTOR Own dataSusan George United Kingdom Bristol 2013-11-06 13:49 ROLE_CONTRIBUTOR Own dataGil Guerra-Junior Brazil Campinas 2013-12-17 09:06 ROLE_CONTRIBUTOR Own data


Gillian Barker Sweden Uppsala 2013-04-26 13:51 ROLE_CONTRIBUTOR Own dataGilvydas Verkauskas Lithuania Vilnius 2013-11-13 07:36 ROLE_CONTRIBUTOR Own dataGanesh Jevalikar India Gurgaon 2012-04 ROLE_CONTRIBUTOR Own dataGrit Sommer Switzerland Bern 2013-06-10 16:41 ROLE_CONTRIBUTOR Own dataGuilherme Guaragna Filho

Brazil Campinas 2013-12-27 03:11 ROLE_CONTRIBUTOR Own data

Ulrike Halbsguth Switzerland Bern 2013-12-17 09:19 ROLE_CONTRIBUTOR Own dataYAU, Ho-chung Hong Kong Hong Kong Prince of

Wales Hospital2015-05-20 18:46 ROLE_CONTRIBUTOR Own data

Heba Elsedfy Egypt Cairo Ain Shams University


Heim Beatrice Switzerland Bern 2015-05-26 13:54 ROLE_CONTRIBUTOR Own dataHelena Gleeson United Kingdom Birmingham University 2012-12-28 17:10 ROLE_CONTRIBUTOR Own dataOlaf Hiort Germany Luebeck 2010-04-19 13:18 ROLE_CONTRIBUTOR Own dataPaul-Martin Holterhus Germany Kiel 2008-12-17 09:58 ROLE_CONTRIBUTOR Own dataHuseyin Ozbey Turkey Istanbul University 2014-10-07 17:05 ROLE_CONTRIBUTOR Own dataHetty Van Der Kamp Netherlands Utrecht 2016-01-07 12:47 ROLE_CONTRIBUTOR Own dataIeuan Hughes United Kingdom Cambridge 2010-11-12 08:25 ROLE_CONTRIBUTOR Own dataIvanka Dimova Bulgaria Sofia 2016-05-27 18:10 ROLE_CONTRIBUTOR Own dataIngrid Nermoen Norway Oslo 2016-02-18 08:44 ROLE_CONTRIBUTOR Own dataVladimir Kojovic Serbia Belgrade 2014-07-07 08:57 ROLE_CONTRIBUTOR Own data

Sukran Poyrazoglu Turkey Istanbul University 2015-02-10 11:04 ROLE_CONTRIBUTOR Own dataIroro Yarhere Nigeria Port Harcourt 2013-02-05 22:21 ROLE_CONTRIBUTOR Own data

Jacqueline Hewitt Australia Melbourne 2013-08-18 17:02 ROLE_CONTRIBUTOR Own dataSyed Jamal Raza Pakistan Karachi National

Institute of Child Health2014-04-21 06:31 ROLE_CONTRIBUTOR Own data

Janepiper United Kingdom Royal Devon & Exeter NHS Trust


Jeremy William Tomlinson

United Kingdom Oxford Churchill Hospital 2016-02-26 16:34 ROLE_CONTRIBUTOR Own data

Jennifer Heeley USA St Louis 2014-03-18 15:07 ROLE_CONTRIBUTOR Own data


Jose Maria Martos Spain Murcia 2015-01-09 11:39 ROLE_CONTRIBUTOR Own dataJohn Barton United Kingdom Bristol 2013-11-22 12:44 ROLE_CONTRIBUTOR Own dataDr John Dean United Kingdom Exeter 2015-06-04 17:02 ROLE_CONTRIBUTOR Own dataDr Colin Johnston United Kingdom North Thames CRN 2015-09-21 16:09 ROLE_CONTRIBUTOR Own dataJayne Starrett United Kingdom Oxford Churchill Hospital 2016-06-15 14:01 ROLE_CONTRIBUTOR Own dataJuliana Gabriel Ribeiro De Andrade

Brazil Campinas 2014-02-12 13:05 ROLE_CONTRIBUTOR Own data

Justin Davies United Kingdom Southampton 2012-04-13 13:02 ROLE_CONTRIBUTOR Own dataNatalia Kalinchenko Russia Moscow - Endocrinology 2015-03-19 13:48 ROLE_CONTRIBUTOR Own dataKatherine Hawton United Kingdom Bristol 2016-06-02 15:08 ROLE_CONTRIBUTOR Own data

Kathryn Cox United Kingdom Glasgow RHC 2012-08-08 09:24 ROLE_CONTRIBUTOR Own data

Katrin Heldt Switzerland St Gallen 2015-03-06 14:40 ROLE_CONTRIBUTOR Own dataKhaled Mohamed Elkhashab

Egypt Cairo University 2015-11-29 23:36 ROLE_CONTRIBUTOR Own data

Korcan Demir Turkey Izmir 2014-03-05 22:15 ROLE_CONTRIBUTOR Own dataLaura Audi Spain Barcelona 2010-07-21 13:12 ROLE_CONTRIBUTOR Own dataLiat de Vries Israel Petah Tiqvah 2011-11-01 19:58 ROLE_CONTRIBUTOR Own dataLeendert Looijenga Netherlands Rotterdam 2008-12 ROLE_CONTRIBUTOR Own dataAndrea Luczay Hungary Budapest 2015-05-02 15:11 ROLE_CONTRIBUTOR Own dataMohamed A Baky Fahmy

Egypt Cairo Al Azhar University 2015-04-12 20:11 ROLE_CONTRIBUTOR Own data

Manuela Guenthardt Switzerland St Gallen 2015-03-07 09:01 ROLE_CONTRIBUTOR Own dataMona Alkhawari Kuwait Kuwait 2010-11-08 15:37 ROLE_CONTRIBUTOR Own dataChourouk Mansour Morocco Casablanca 2013-04-26 11:42 ROLE_CONTRIBUTOR Own dataMariam Kourime United Kingdom Glasgow RHC 2016-01-25 09:42 ROLE_CONTRIBUTOR Own dataMario Giuffre Italy Palermo 2015-03-10 13:48 ROLE_CONTRIBUTOR Own dataMarise Abdou Egypt Cairo University 2015-05-18 21:59 ROLE_CONTRIBUTOR Own data

Markus Bettendorf Germany Heidelberg 2014-03-18 15:20 ROLE_CONTRIBUTOR Own dataMarlijn Hendrick Netherlands Nijmegen 2016-03-08 14:00 ROLE_CONTRIBUTOR Own data


Marta Korbonits United Kingdom London Barts Endocrinology


Martin McMillan United Kingdom Glasgow RHC 2013-02-12 14:41 ROLE_CONTRIBUTOR Own dataMassimiliano Silveri Italy Rome 2012-12-26 09:25 ROLE_CONTRIBUTOR Own dataInas Mazen Egypt Cairo National Research

Center2011-05-20 18:49 ROLE_CONTRIBUTOR Own data

Ruth Mcgowan United Kingdom Glasgow RHC 2012-02-02 08:25 ROLE_CONTRIBUTOR Own dataMartine Cools Belgium Ghent 2010-01-08 11:28 ROLE_CONTRIBUTOR Own dataMarie Lindhardt Johansen

Denmark Copenhagen 2013-10-17 14:24 ROLE_CONTRIBUTOR Own data

Mahmoud Marei Egypt Cairo University 2014-10-07 04:15 ROLE_CONTRIBUTOR Own dataMarek Niedziela Poland Poznan 2011-02-06 16:44 ROLE_CONTRIBUTOR Own dataMarie-Lou Nussbaum Switzerland Bern 2015-09-25 08:53 ROLE_CONTRIBUTOR Own dataKlaus Mohnike Germany Magdeburg 2014-12-16 10:59 ROLE_CONTRIBUTOR Own dataMartina Rodie United Kingdom Glasgow RHC 2010-07-07 10:35 ROLE_CONTRIBUTOR Own dataMars Skae United Kingdom Manchester Children's


Nayananjani Karunasena

United Kingdom Sheffield Hallamshire 2014-07-24 13:48 ROLE_CONTRIBUTOR Own data

Niels H Birkebaek Denmark Aarhus 2015-08-21 13:19 ROLE_CONTRIBUTOR Own dataRupa Ahluwalia United Kingdom Glasgow 2016-02-22 17:13 ROLE_CONTRIBUTOR Own dataNoha Musa Egypt Cairo University 2015-05-18 22:15 ROLE_CONTRIBUTOR Own dataNils Krone United Kingdom Birmingham Children's


Nils Krone United Kingdom Sheffield Children's Hospital


Nicholas Conway United Kingdom Dundee 2014-04-22 14:49 ROLE_CONTRIBUTOR Own dataOliver Blankenstein Germany Berlin 2013-07-12 07:54 ROLE_CONTRIBUTOR Own dataOTILIA MARGINEAN Romania Timisoara 2015-07-30 20:41 ROLE_CONTRIBUTOR Own dataPeter Hindmarsh United Kingdom London UCL-GOSH 2015-09-02 15:31 ROLE_CONTRIBUTOR Own dataPitteloud Switzerland Lausanne 2015-05-18 14:25 ROLE_CONTRIBUTOR Own dataRomualdas Tomas Preiksa

Lithuania Kaunas 2016-03-01 15:14 ROLE_CONTRIBUTOR Own data


Syed Qasim Mehdi Pakistan Karachi Civil Hospital 2014-03-11 14:07 ROLE_CONTRIBUTOR Own dataRichard Quinton United Kingdom Newcastle 2016-03-18 16:20 ROLE_CONTRIBUTOR Own dataRadwa Ahmed Shamma Egypt Cairo University 2015-12-14 05:08 ROLE_CONTRIBUTOR Own dataRasa Verkauskiene Lithuania Kaunas 2016-02-23 11:02 ROLE_CONTRIBUTOR Own dataRaul E. Pina-aguilar United Kingdom Aberdeen 2016-06-10 16:01 ROLE_CONTRIBUTOR Own data

Annika Reims Sweden Gothenburg University 2011-12 ROLE_CONTRIBUTOR Own dataRenata Markosyan Armenia Yerevan 2015-10-21 19:13 ROLE_CONTRIBUTOR Own dataRieko Tadokoro-Cuccaro

United Kingdom Cambridge 2012-11-07 12:06 ROLE_CONTRIBUTOR Own data

Rodolfo Rey Argentina Buenos Aires 2012-01-26 16:16 ROLE_CONTRIBUTOR Own dataRomina Grinspon Argentina Buenos Aires 2016-02-04 17:00 ROLE_CONTRIBUTOR Own dataRosa Scaramuzzo Italy Pisa 2011-02-02 14:19 ROLE_CONTRIBUTOR Own dataProfessor Richard Ross United Kingdom Sheffield Hallamshire 2012-06-13 08:36 ROLE_CONTRIBUTOR Own dataRyohei Sekido United Kingdom Aberdeen 2016-01-07 13:27 ROLE_CONTRIBUTOR Own dataPavel Rusev United Kingdom Sheffield Hallamshire 2012-10-17 15:56 ROLE_CONTRIBUTOR Own dataSabine Ryser Switzerland Bern 2014-04-14 13:59 ROLE_CONTRIBUTOR Own dataNurcin Saka Turkey Istanbul University 2010-12-02 13:35 ROLE_CONTRIBUTOR Own dataSabah Alvi United Kingdom Leeds 2011-12 ROLE_CONTRIBUTOR Own dataSam Reerds Netherlands Rotterdam 2013-09-05 16:38 ROLE_CONTRIBUTOR Own dataSilvia Andonova Bulgaria Sofia 2015-04-27 20:03 ROLE_CONTRIBUTOR Own dataSantiago Vallasciani Italy Milan 2013-08-31 18:08 ROLE_CONTRIBUTOR Own dataSilvano Bertelloni Italy Pisa 2010-05-24 16:18 ROLE_CONTRIBUTOR Own dataValerie Schwitzgebel Switzerland Geneva 2014-03-14 16:00 ROLE_CONTRIBUTOR Own dataSabine Elisabeth Hannema

Netherlands Rotterdam 2013-10-23 20:41 ROLE_CONTRIBUTOR Own data

Sarah Ehtisham United Kingdom Manchester Children's Hospital


Selma Feldman Witchel USA Pittsburgh 2014-01-14 12:28 ROLE_CONTRIBUTOR Own dataFaisal Ahmed United Kingdom Glasgow RHC 2009-11-01 12:01 ROLE_CONTRIBUTOR Own data


Christos Shammas Cyprus Nicosia 2014-06-17 10:44 ROLE_CONTRIBUTOR Own data

Shaymaa Ahmed Elbehairy

Egypt Cairo University 2015-05-22 19:06 ROLE_CONTRIBUTOR Own data

Simona Fica Romania Bucarest 2016-04-13 08:49 ROLE_CONTRIBUTOR Own dataHelen Simpson United Kingdom Cambridge 2016-02-09 13:56 ROLE_CONTRIBUTOR Own dataSten Drop Netherlands Rotterdam 2009-01-26 15:47 ROLE_CONTRIBUTOR Own dataDr Stefan Riedl Austria Vienna 2014-05-28 18:32 ROLE_CONTRIBUTOR Own dataSusanne Jarlvik Alm Sweden Stockholm 2014-06-18 07:33 ROLE_CONTRIBUTOR Own dataTatiana Garmanova Russia Moscow - Urology 2014-05-09 08:28 ROLE_CONTRIBUTOR Own dataTania A. S. S. Bachega Brazil Sao Paulo 2015-07-23 05:27 ROLE_CONTRIBUTOR Own dataToby Philip Candler United Kingdom Bristol 2016-06-08 13:13 ROLE_CONTRIBUTOR Own dataTulay Guran Turkey Istanbul Marmara 2012-05-30 20:18 ROLE_CONTRIBUTOR Own dataSafdar Hassan Javed Pakistan Faisalabad 2013-06-15 03:09 ROLE_CONTRIBUTOR Own dataUta Neumann Germany Berlin 2014-09-24 10:15 ROLE_CONTRIBUTOR Own dataVassos Neocleous Cyprus Nicosia 2014-06-17 09:02 ROLE_CONTRIBUTOR Own dataVIncenzo Davide Catania

Italy Rome 2013-05-03 14:38 ROLE_CONTRIBUTOR Own data

Walter Bonfig Germany Munich Technical University


Georgina Williams United Kingdom Bristol 2013-12-02 14:54 ROLE_CONTRIBUTOR Own dataYu Yongguo China Shanghai 2015-11-25 06:07 ROLE_CONTRIBUTOR Own data

Yvonne Van Der Zwan Netherlands Rotterdam 2011-05-25 08:10 ROLE_CONTRIBUTOR Own dataZofia Kolesinska Poland Poznan 2012-10-04 14:58 ROLE_CONTRIBUTOR Own dataDorothy Bishop United Kingdom Oxford 2014-06-25 15:27 ROLE_RESEARCHER Own dataAlma Toromanovic Bosnia and

HerzegovinaTuzla 2011-02-14 17:10 ROLE_USER Other users profiles

Amy Wisniewski USA Oklahoma City 2011-03-03 17:43 ROLE_USER Other users profilesYatagama Arachchige Arundathi Jayasena

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Birgit Koehler Germany Berlin 2012-11 ROLE_USER Other users profilesLesley Breech USA Cincinnati 2010-04 ROLE_USER Other users profilesBeata Wikiera Poland Wroclaw 2010-07 ROLE_USER Other users profilesCarlos Antonio Bruno Da Silva

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Catherine Hopkins Hong Kong Hong Kong University 2013-02-12 12:07 ROLE_USER Other users profilesLimor Meoded Danon Israel Tel Aviv 2014-09-23 11:43 ROLE_USER Other users profilesDorien Belgium Ghent 2013-08-22 09:07 ROLE_USER Other users profilesDonna O'Neil United Kingdom Birmingham University 2010-10-15 08:55 ROLE_USER Other users profilesMona Ellaithi Sudan Khartoum 2010-06-03 13:13 ROLE_USER Other users profilesErika Tomlinson Australia Melbourne 2015-03-10 11:32 ROLE_USER Other users profilesFriederike Maassen Germany Goettingen 2014-07-22 22:32 ROLE_USER Other users profilesFrancisco Truong Canada Vancouver 2015-01-25 21:15 ROLE_USER Other users profilesFelix Riepe Germany Kiel 2009-11-26 13:30 ROLE_USER Other users profilesDaniela-Brindusa Gorduza

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United Kingdom Southampton 2013-01-29 21:33 ROLE_USER Other users profiles

Ina Amarillo USA St Louis 2013-11-05 03:38 ROLE_USER Other users profilesIvo Arnhold Brazil Sao Paulo 2011-06-13 19:30 ROLE_USER Other users profilesJohn Watt United Kingdom Glasgow RHC 2013-06-05 10:50 ROLE_USER Other users profilesAchmad Zulfa Juniarto Indonesia Semarang 2013-08-19 11:26 ROLE_USER Other users profilesKen Mcelreavy France Paris 2009-11-19 16:48 ROLE_USER Other users profilesJennifer Kernreiter Austria Vienna 2015-05-03 17:48 ROLE_USER Other users profiles

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Pierre Mouriquand France Lyon 2009-04 ROLE_USER Other users profilesNadine Hornig Germany Kiel 2015-01-27 09:25 ROLE_USER Other users profilesNicos Skordis Cyprus Nicosia 2012-07-30 16:38 ROLE_USER Other users profilesNicole Reisch Germany Munich Ludwig

Maximilian University2008-12 ROLE_USER Other users profiles

Faisal Nugud Sudan Gezira 2011-01 ROLE_USER Other users profilesNeil Wright United Kingdom Sheffield Children's

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Olcay Evliyaoglu Turkey Istanbul Cerrahpasa 2012-11-17 19:30 ROLE_USER Other users profilesOlle Soder Sweden Stockholm 2009-10-14 14:44 ROLE_USER Other users profilesAndrew Purvis United Kingdom Glasgow RHC 2016-02-03 09:44 ROLE_USER Other users profilesCharmian Quigley USA Indianapolis 2011-11 ROLE_USER Other users profilesRECEP Turkey Ankara 2015-09-23 21:03 ROLE_USER Other users profilesRod Mitchell United Kingdom Edinburgh 2013-01-30 20:26 ROLE_USER Other users profilesRichard Sinnott United Kingdom Glasgow RHC 2009-10-30 16:28 ROLE_USER Other users profilesGianni Russo Italy Milan 2011-12 ROLE_USER Other users profilesVerena Schoenbucher Switzerland St Gallen 2015-03-19 08:29 ROLE_USER Other users profilesSyed Farrukh Masroor Pakistan Karachi National

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