News

10 posts

Welcoming Nationwide to the Network!

The THRIVE team at Nationwide Children’s Hospital in Columbus, Ohio has joined the Network! We are glad to expand the work of the DSD-TRN with this excellent team. The DSD-TRN now includes 16 pediatric DSD teams across the United States, and continues to partner with the patient and family advocacy organization, Accord Alliance. The team at Nationwide has included the below information about themselves:

The THRIVE Difference of Sexual Development Team at Nationwide Children’s Hospital in Columbus, Ohio is a transdisciplinary team involving Urology, Endocrinology, Pediatric and Adolescent Gynecology, Genetics, Child and Adolescent Psychology, and Medical Social Work. The THRIVE-DSD team meets with patient and families throughout the child’s development to provide support and education on long-term expectations, sexual function, fertility, and self-image. The team provides long-term follow-up which may begin during the neonatal period, continue through childhood and adolescence, and through the transition to adult care. The THRIVE-DSD transdisciplinary model involves their team members meeting with the patient and family in one room to completely answer questions and skillfully provide education from each team member’s lens. They place a large importance on imbedding behavioral health providers into their team to promote psychosocial functioning and optimal coping with medical information. THRIVE stands for: Team-based Healthcare that Respects the Individual and Values Emotions – this acronym continues to be their driving force.

Updates from our Clinical Working Groups: January 2022

Anatomy/Surgery

The Anatomy/Surgery workgroup meets regularly to discuss and advance issues of particular interest to urologists, gynecologists and pediatric surgeons who care for patients with DSD. We are currently focused on implementing a new way of collecting anatomic data, and contributing the surgeon perspective to the clinic and research aims of the TRN.

Endocrine

The Endocrine Workgroup is currently working on publication of Best Practices for CAH Newborn Screening for 2022. A descriptive series of complete and partial androgen insensitivity cases is in preparation for publication in 2022 in collaboration with several workgroups.

Fertility

The Fertility Workgroup seeks to improve fertility outcomes in DSD. This includes assessing fertility potential in various conditions based on current data, current technology and investigational techniques as well as disseminating this knowledge and resources to patients and providers.

Genetics

The Genetics workgroup is involved with two major projects at this time: (1) the genetics, psychosocial, anatomical, and endocrine features of ovotesticular DSD and (2) the phenotypic and genetic variability in individuals with variants in the NR5A1 gene. There is also a research group assessing the ability of a new genetic tool called Optical Genomic Mapping (supported by the Bionana platform). We hope this new technology will be able to detect a wide range of genetic variants in DSD, which will support clinical testing in the future.

Psychosocial

The Psychosocial Workgroup has been working on multiple projects aimed at progressing the psychosocial care of people with DSD. These projects include development of an intervention for parents shortly after the birth of their child, research on the gender identity and feelings about the self among people with DSD, and understanding how professionals assess the psychosocial functioning of people with DSD.

Updates from our Patient/Family-Centered Working Groups: January 2022

Patient and Family Stakeholders

Accord Alliance, in partnership with the TRN and its sites, held its first ever network-wide Family Day Peer Support meeting. We plan to continue to offer these days of support for patients and families every quarter. Look for communication on days and times from your DSD provider teams.

Patient and Family Education

A repository of web-based educational and support resources for people with DSD and their families was created by healthcare providers and advocates in the DSD TRN. The repository, Lend A Helping Hand, was updated in 2021 and is available online and as a free booklet than can be downloaded: http://www.accordalliance.org/resource-guide/.

University of Kentucky has joined the network

The DSD-TRN is excited to welcome the University of Kentucky to the network!

“Kentucky Children’s Hospital at the University of Kentucky is the leading tertiary care referral center for children of Appalachia and across Kentucky.  The divisions of pediatric urology and pediatric endocrinology have teamed with experts from genetics and psychology to establish a multi-disciplinary clinic to optimally serve patients with differences of sex development.  This commitment to excellence is bolstered by our partnership with the DSD-TRN to allow our team to provide the best possible care for patients with DSD in Kentucky. “

You can request an appointment on the “Referrals” page.

The network has expanded to 10 sites including NY, Chicago and St Louis!

The DSD-TRN has now expanded to 10 sites with the arrival of the DSD clincal teams at Cohen Children’s Hospital/North Shore/LIJ in New York, Lurie Children’s Hospital in Chicago and Washington University in St Louis. We are very grateful for the added expertise brought by these new teams, who now serve a much wider population. 

The network is expanding to Cincinnati and DC

Two new clinical and research sites have joined the DSD-TRN in 2014, Cincinnati Children’s Hospital and National Children’s Hospital in D.C., expanding the network of centers providing quality care for DSD patients and their families.

En annan ökande faktor för ökad sexuell aktivitet är sex efter ett hett gräl. Men är det verkligen så? Kanske om det är en sällsynt erfarenhet. Men det bör absolut inte vara en norm, eftersom negativa känslor, ömsesidig förbittring inte bör överföras till den egna sängen, eftersom detta är behäftat med många sjukdomar hos både kvinnor och män efteråt. Här kan förresten början cialis on line och alla slags sjukdomar som är förknippade med potens vara. Det är alltså bättre att inte överföra alla gräl till sin kärleksbädd och lämna någonstans långt utanför dess gränser.

The DSD-TRN has a new clinical site in Phoenix

The DSD clinical team at Phoenix Children’s Hospital is now part of the DSD-TRN! The multidisciplinary team provides state-of-the art care to DSD families and has won support of the National Institutes of Health to join the network. The NICHD (Eunice Kennedy Shriver Institute for Child Health & Human Development) awarded funds to ensure seamless integration of the Phoenix team into the DSD-TRN, including expanded psychosocial support for patients and their families, use of standardized cinical forms across the network, and participation in research aimed at defining best-practices in the field for the future. The DSD-TRN welcomes the added expertise in our network as well as the opportunity to offer our services to DSD families a new geographical area of the country.

In an effort to counter the opioid crisis https://www.faastpharmacy.com/treatments/erectile-dysfunction/cialis-black, many pharmacies in the US participate in drug take-back programs, allowing the safe disposal of unused or expired medications.

Sport, Science, and Diversity

On Friday May 10, 2013, the UCLA institute for Society and Genetics hosts a symposium entitled “Hurdling over Sex? Sports, Science and Diversity”. Speakers include DSD-TRN Principal Investigator and Director of the ISG, Eric Vilain, and Dr. Maria José Martínez-Patiño, Prof. at the University of Vigo, Spain and former best Spanish hurdler.

“Description:

Should athletic competitions at the local, national, and international levels continue to organize separate events for men and women? What are the biological and cultural reasons for this sexual separation? What other possibilities for organizing athletic competitions are both possible and desirable? This symposium will address these questions by bringing together perspectives offered by athletes and scholars of sports, gender, and biomedicine. It will consider past and recent controversies about “gender verification” testing and the International Olympic Committee’s adoption of new regulations for female athletes with hyperandrogenism in 2011. Also, it aims to provide an interdisciplinary forum to discuss the relationship between sports, science, and sex and to innovate productive ideas for how sporting institutions might implement policies that can maximize fairness and respect for human diversity.”

Full schedule here: http://socgen.ucla.edu/events/hurdling-over-sex-sports-science-and-diversity/

iDSD Conference in Glasgow

The DSD-TRN will be well represented at the upcoming International meeting on DSD held in Glasgow June, with two accepted oral presentations by Drs. Patricia Fechner (Seattle Children’s) and David Sandberg (U. MIchigan) and an invited poster.