Collaborate

Collaborate

Organizations receive a free registry that reflects their brand 

Collect

Collect

Families opt-in and complete detailed medical surveys 

Share

Share

Collected data is shared openly with researchers to speed discovery

CONNECT

CONNECT

Study and trial notices are sent to qualified participants

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  • We expect CONNECT to put the Kidney Cancer Association and its 70,000 members on the cutting edge of participatory medicine.

    Bill Bro, survivor and CEO, Kidney Cancer Association
  • CONNECT will enable our organisation to have an international database of medical professionals specialising in idiopathic intracranial hypertension (IIH) accessible to patients needing experienced doctors.

    Heidi Wilson, The I Have IIH Foundation
  • Parry Romberg Syndrome is a very rare disorder causing physical changes to our faces and other parts of our body as well as emotional stress to cope with those losses. We hope that through PatientCrossroads CONNECT, research will finally be done to help us get the answers we need.

    Marilyn Neal, The Romberg’s Connection
  • The CONNECT Patient Registry opens doors to countless opportunities. It makes it possible for us to fill the ALGS data bank so patterns are discerned, hypotheses are formulated and discoveries are catalyzed. We finally can grow the knowledge base that will build a better life for everyone with ALGS.

    Cindy L. Hahn, President and CEO, Alagille Syndrome Alliance
  • OAA is excited to join PatientCrossroads to create the Organic Acidemia Association CONNECT patient registry. We now have a tool that allows families to share medical information to benefit each other, as well as to provide necessary and concise information to researchers and clinicians to design studies and clinical trials.

    Kathy Stagni, Organic Acidemia Association
  • We are thrilled to partner with PatientCrossroads to offer a patient registry for eosinophil-associated diseases. This registry will shed light on the number of people living with a spectrum of rare eosinophil-associated diseases and provide insight into diagnostic delays and current treatment practices.

    Dr. Wendy Book, President, American Partnership for Eosinophilic Disorders
  • The FOD (Fatty Oxidation Disorders) Family Support Group's main Mission is to connect, network, and share information and experiences with Families across the world. Now with our new FOD CONNECT Registry we will be able to expand on that Mission, as well as provide valuable information to aide our researchers in developing new diagnosis and treatment options for the various FODs.

    Deb Lee Gould, MEd, Director, FOD Family Support Group
  • Facilitating families coming together with scientists and clinical researchers to unlock the mysteries of Trisomy 18 has long been a dream of the Trisomy 18 Foundation. Patient Crossroads’ commitment to these shared goals makes all this possible much sooner than would have been possible without their support.

    Victoria Miller, Founder and Executive Director, Trisomy 18 Foundation

PatientCrossroads has literally written the book on patient registries.  Kyle Brown and Pat Furlong have co-authored the patient registry chapter for the new book Rare Diseases: Challenges and Opportunities for Social Entrepreneurs  

Order it now!

In part three of five articles by Siren Interactive, Eileen O’Brien discusses how important patient registries are for the acceleration of orphan drugs and the awareness of rare diseases, as well as looking into the challenges of funding and duplication.  Read More!